Adherence to Combination Therapy in Persons Living With HIV: Balancing the Hardships and the Blessings

Adherence to Combination Therapy in Persons Living With HIV: Balancing the Hardships and the Blessings

JANACMellors Erlen, Vol. 10,/ Adherence No. 4, July/August to Combination 1999 Therapy Adherence to Combination Therapy in Persons Living With HIV: B...

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JANACMellors Erlen, Vol. 10,/ Adherence No. 4, July/August to Combination 1999 Therapy

Adherence to Combination Therapy in Persons Living With HIV: Balancing the Hardships and the Blessings Judith A. Erlen, PhD, RN, and Mary Pat Mellors, PhD, RN Evidence from clinical trials demonstrates the benefits of combination therapy in persons living with HIV (PLWHIV); however, there is little information about the patient’s experience when taking a complex regimen. Thus, the primary purpose of this preliminary study was to describe the everyday experience of PLWHIV who were prescribed combination therapy in order to identify a potential intervention to enhance adherence to this regimen. The secondary purpose was to examine the association between adherence to combination therapy and quality of life. The researchers purposively sampled six PLWHIV (two women and four men) to reflect the diverse demographic characteristics of the population of PLWHIV. The themes that evolved were decision making, difficulties, problem solving, and quality of life. Clinical indicators provide only one measure of the effectiveness of combination therapy. When the informants described the outcome of this therapy as “having their life back,” they spoke of having quality in their lives that they viewed as more than their physical health. Key words: adherence, combination therapy, HIV infection, qualitative research

Treatment options for persons living with HIV (PLWHIV) continue to evolve. Highly active antiretroviral therapy (HAART) is the currently recommended treatment (Carpenter et al., 1997). Individuals are placed on this aggressive regimen early in the course of the disease process in order to suppress the virus and minimize resistance to the drugs (Deeks, Smith, Holodniy, & Kahn, 1997; Hogg et al., 1998; Mellors, 1996). With almost 250,000 adults living

with AIDS in the United States and an estimated 1,000,000 Americans who are infected with HIV (Centers for Disease Control [CDC], 1998), the potential exists to enable a significant number of PLWHIV to increase their longevity and have productive, healthier lives through the proper use of combination therapy. Based on what is known about HIV resistance, once PLWHIV begin combination therapy, it is imperative that they adhere to the regimen (Ickovics & Meisler, 1997; Keisuke, Kavlick, & Mitsuya, 1997; Mellors, Munoz, et al., 1997). Patient adherence is vital to the successful development of effective antiretroviral combinations (Deeks et al., 1997). However, the prescribed regimens are extremely complex and frequently require some lifestyle changes. For example, PLWHIV may need to coordinate dosing schedules, timing of and/or content of their meals, and selfadministration of their medications with their work schedule. The complexity and burden of planning for and implementing the self-administration of medication challenges the individual and increases the person’s risk for nonadherence (Chesney & Folkman, 1994).

Judith A. Erlen, PhD, RN, is an associate professor and the associate director at the Center for Research in Chronic Disorders, School of Nursing, University of Pittsburgh. Mary Pat Mellors, PhD, RN, is a research associate at the School of Nursing, University of Pittsburgh. The authors would like to acknowledge Laurel Steinke, a work study student at the University of Pittsburgh, who transcribed the interviews.

JOURNAL OF THE ASSOCIATION OF NURSES IN AIDS CARE, Vol. 10, No. 4, July/August 1999, 75-84 Copyright © 1999 Association of Nurses in AIDS Care

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Although studies continue to demonstrate the benefits of HAART, little is known about the patient’s experience of living with this regimen. To assist PLWHIV to adjust to their prescribed regimen, health care providers need to understand the ways in which the daily lives of PLWHIV are changed or remain the same because of taking combination therapy. However, health workers may not be able to apply findings from adherence studies of patients with other chronic disorders to HIV infection directly. The complexity of the medication regimen and the necessity for strict adherence are issues specific to PLWHIV who take combination therapy. Information specific to integrating combination therapy into one’s life is needed to enable health professionals to counsel and advise PLWHIV to manage their daily regimen. Therefore, the primary purpose of this preliminary study was to describe the experience of PLWHIV who were prescribed combination therapy. The secondary purpose was to explore the relationship between adherence and quality of life.

Background The goal in chronic disease management is to retard disease progression and thereby improve a person’s quality of life. Similar to other chronic disorders, the course of HIV infection varies with the individual, changes over time, and “can be shaped and managed” (Corbin & Strauss, 1992, p. 10). Given current knowledge, the management of PLWHIV will include their taking combination therapy for the remainder of their lives. The high degree of polypharmacy which PLWHIV must deal with increases their likelihood for nonadherence (McDonald & Gerber, 1997). The regimen is complicated because of the number of drugs that are prescribed, the dosing schedule, and the specific requirements associated with each drug (Deeks et al., 1997; Gulick, 1997; Volberding & Deeks, 1998). As a result of this complexity, combination therapy intrudes extensively into the lives of PLWHIV (Franchi & Wenzel, 1998; Williams, 1997). The extraordinary demands of HAART require that PLWHIV be highly committed to following this complex regimen (Katzenstein, 1997; Roland, 1998). The possibility exists that when PLWHIV have undetectable viral loads and increasing CD4 T-cell counts, they may begin to wonder about the need to adhere so

closely to the regimen. Similar to persons with other chronic disorders, long-term adherence may become difficult (Barthwell, 1997). Thus, there is a need to understand the difficulties of living with this regimen in order to enable PLWHIV to adapt their lifestyle and to promote adherence to combination therapy. Combination therapy is self-administered. As with other self-administered medications, PLWHIV may not take them correctly (Favre, Delacretaz, Badan, Glauser, & Waeber, 1997). Studies show that PLWHIV often discontinue the use of antiretorviral medications on their own and report intentional missed doses and “drug holidays” (Aversa & Kimberlin, 1996; Aversa, Kimberlin, & Segal, 1998). “Drug holidays” have been shown to be associated with virolgic drug failure. Vanhove, Schapiro, Winters, Merigan, and Blaschke (1996) reported that patients (n = 7) on a two-dose regimen of saquinavir initially were adherent; however, they developed a rapid increase in viral load following only a few days of not taking the drug as prescribed. Hecht, Colfax, Swanson, and Chesney (1998) reported that the nonadherent patients in their study had significantly more viremia than did the adherent patients (p = .03). Using a 3-day medication recall, Hecht’s team of researchers found that 22% of the 134 subjects reported not taking 20% or more of their protease inhibitor medications over the previous 3 days. Research demonstrates that the regimen is complex, that adherence is necessary, and that a number of PLWHIV are nonadherent (Deeks et al., 1997; Gulick, 1997; Hecht et al., 1998; Katzenstein, 1997; Vanhove et al., 1996). However, a search of electronic databases yielded no studies that address the daily experience of living with this regimen of combination therapy.

Methods The primary purpose of this preliminary qualitative study was to describe the everyday experience of PLWHIV who were prescribed combination therapy in order to identify a potential intervention to enhance their adherence. A secondary goal was to explore the association between adherence to combination therapy and quality of life. The Institutional Review Board of the University of Pittsburgh approved the investigators’ request prior to the initiation of the study to ensure the protection of human subjects.

Erlen, Mellors / Adherence to Combination Therapy Table 1.

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Participant Characteristics

Participant

Age

Gender

Race

Exposure Category

Education

Employment Status

1 2 3 4 5 6

48 47 53 36 30 49

Male Female Female Male Male Male

African American White African American White African American White

Intravenous drug use Heterosexual Intravenous drug use Gay or bisexual Gay or bisexual Gay or bisexual

High school High school High school College College High school

Disability Disability Disability Disability Full-time Disability

Setting and Sample For this pilot study, the researchers purposively sampled 6 adult PLWHIV who reflected the diverse demographic characteristics of the HIV community (race, gender, HIV-exposure category) and who were prescribed combination therapy. These individuals were from a university clinical trial unit, a community-based AIDS ministry, and a private practice. Those who participated were at least 18 years of age, diagnosed with HIV infection, free of neurocognitive impairment, and prescribed combination therapy. All gave informed consent. Of the participants, 5 were on disability, and only 1 individual was employed full-time; 3 were White, and 3 were African American, and all participants had a minimum of high school education. The participant characteristics are displayed in Table 1.

Procedure PLWHIV who met the inclusion criteria were invited to participate. Following informed consent, each participant was screened by one of the investigators for neurocognitive impairment using the HIV Dementia Scale (HDS) (Power, Selnes, Grim, & McArthur, 1995). The purpose of this screening was to ensure that participants would be able to understand the interviewers’ questions and offer coherent responses. All potential participants who were screened demonstrated no sign of HIV dementia as indicated by their scores of 10 or higher on the four tests of the HDS: 5-minute recall of four items, antisaccadic eye movements, timed written alphabet, and cube copy time. Following the screening, each individual participated in a 30- to 45-minute audiotaped interview with one of the investigators. Interviews were held in either

a private office in the School of Nursing or in the participant’s home. When the interview was concluded, each informant was offered a small stipend. Those persons who came to the School of Nursing were reimbursed for their transportation expenses.

Measures The researchers developed a semistructured interview guide based on a review of the adherence and combination therapy literature. This guide provided direction for the interview questions, as well as permitted some flexibility based on the participant’s response. The purpose of the interview guide was to elicit informants’ real life descriptions of their experience of taking combination therapy. Instructions and questions included the following: Describe your understanding of your treatment plan? Describe your daily routine when taking combination therapy? Have you experienced any problems such as side effects, access, cost, interactions with other medications, dosing schedules, and other components of the regimen? Has taking combination therapy changed the quality of your life? If so, in what ways? Informants also completed a brief sociodemographic form. This form was developed by the Center for Research in Chronic Disorders, University of Pittsburgh, School of Nursing.

Data Analysis The interviews were transcribed verbatim. Each interview transcript was examined line by line using open coding procedures (Strauss, 1987). This analytic technique was used only to elicit major themes of the participants’ experience of taking combination therapy, not to generate theory (Sandelowski, 1995). The

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data were reviewed and combined into broader concepts. The concepts were refined into major themes. The investigators independently reviewed each transcribed interview to identify the main themes. Then, the researchers met and discussed their individual findings until consensus was reached regarding the major themes.

Findings The major themes identified in this study included (a) decision making regarding initiating treatment, (b) difficulties, (c) problem solving, and (d) quality of life. The first three themes addressed the primary purpose of this pilot study: to describe the everyday experience of PLWHIV who were prescribed combination therapy in order to identify a potential intervention to enhance adherence. The fourth theme addressed the secondary purpose: to explore the relationship between adherence and quality of life. The participants acknowledged that they occasionally missed a dose. Clearly, although taking drugs was bothersome and cumbersome, the participants attempted to adhere to their treatment regimen because their “life was on the line.”

Decision Making Regarding Initiating Treatment The participants described how they were confronted with initiating treatment because of their deteriorating health status. The respondents had either experienced an AIDS-related complication such as an opportunistic infection, and/or a deterioration in clinical indicators such as a drop in CD4 T-cell count and/or an increase in viral load. Disease progression created a sense of urgency for treatment. One female participant stated, “It was very straightforward that I needed to do something and do something quickly.” A male informant stated, “As I first entered the study, I had a T-cell count below 10. I was at the hospital 20 some times on different occasions. The grim reaper was standing above me.” As the participants discussed their decision making about treatment, they described a positive relationship with their health care providers. The relationship with their caregivers was an important component to their

decision to initiate therapy. The informants spoke about their relationships with their caregivers as one of trust, faith, admiration, and respect. The caregivers provided the participants with critical information regarding clinical indicators for treatment (i.e., CD4 T-cell count, viral load, opportunistic infections), treatment options, and drug-specific information. Most important, caregivers stressed the importance of strict adherence to treatment schedules to prevent the development of drug resistance. The caregivers used their expertise to guide participants to choose the optimal treatment option. One male participant spoke about the support his physician provided: “My doctors, they really hung in there with me. They were in my corner.” In addition to gathering information from their health care providers, the participants sought out information from support groups, other PWLHIV, the literature, and the Internet. One male informant stated, “I was involved in the discussion boards, and I asked all the people who were infected, and I got all kinds of answers.” Observing other PLWHIV who were near death reverse their disease progression influenced one female participant to decide to initiate therapy. “I saw people go from one of these really near death experiences to doing well within a really short period of time. I was even a little jealous and wanted to be part of that.” As part of this decision making, the informants weighed the pros and cons of whether to initiate treatment. The participants learned that without treatment, death would most likely be inevitable. One male participant stated, “I stewed about whether to enter the program, when you take and weigh the options, and continue to deteriorate, or take a shot at a fighting chance. I took the shot at a fighting chance.” In addition, the respondents made decisions to become active participants in managing their care. One male participant stated, “You have to control the disease—get involved. You have the power, so it doesn’t control you.”

Difficulties All of the participants spoke about numerous difficulties they experienced taking combination therapy. The participants identified medication side effects

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such as nausea, gastrointestinal distress, kidney stones, and insomnia as having a significant affect on their lives. One female participant stated, “I just had all of that nausea. I was just really uncomfortable, and I said, ‘I don’t think I can do this for 1 more week.’” The participants also described the sacrifices that they made to adhere to their strict medication regimen. For example, a female participant stated that her life revolved around scheduling and taking medications. Her meal schedule had been compromised because of the need to fast prior to taking indinavir (Crixivan). She stated, “I just can’t eat three meals a day. There’s just not time to do that because of my medication and work schedule. Sleep can be an issue too. Staying up until 11:00 to take the last dose is hard.” The participants stated that the afternoon dose of the protease inhibitor is particularly difficult to remember. A female informant said, “If I’m running, that 3:00 o’clock is the one that I’m gonna miss. Sometimes I switch purses, and I forget to put the medicine in my purse.” Another participant admitted to not being as strict as he should be with fasting and the every 8-hour schedule. He stated, “I’m not as totally strict as maybe I should be. I can’t say I haven’t cheated on fasting, and the three times a day is not necessarily fixed.” Three male participants admitted to occasionally forgetting a dose. One female respondent experienced difficulty maintaining her schedule when she traveled between time zones. She stated, “You can’t go to a 3-hour time zone change and keep taking the medication on the same schedule. It’s impossible! Nobody can do that!” Two participants spoke about the negative psychological impact of taking combination therapy. A male participant stated that most of the time he forgot he had HIV until it was time to take his medicine; he realized that there were serious consequences to forgetting to take medications such as viral resistance. He stated, “My quality of life is very good. The only reason my quality of life isn’t perfect, it’s more the psychological aspect of taking drugs, just realizing the seriousness of the whole situation.”

Problem Solving The participants in this preliminary study realized that there were serious consequences to nonadherence

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to their combination therapy. Despite the challenges of adhering to this rigorous therapeutic regimen, the respondents confronted these difficulties and found ways to adjust and adapt. The informants understood that their “life was on the line.” Although they experienced difficulties in the beginning of their treatment, the informants expressed that they eventually incorporated the medication schedule into their lives; it became a way of life. A female respondent stated, Look at it sorta like a job that you have to do. Do it at the same time every day. If you do it at the same time everyday, it becomes a habit. Something will go off in your mind when it’s 3:00 o’clock. Another female participant stated, “You just don’t forget; it’s like such an important thing in my life. You don’t forget to eat; you don’t forget to take your medication. And your life kinda revolves around the schedule. I never forget.” In addition she stated, “I want to take a drug holiday, and I don’t want to worry about it, but it’s not an option.” Many of the participants developed side effects from the protease inhibitor. For example, nausea was a common side effect among the informants. These individuals developed strategies to eliminate this symptom by taking the protease inhibitor and the antiretroviral medication at different times. They were able to successfully decrease the side effects but continued to maintain the effectiveness of the therapy. A male participant stated, “I had nausea, and I experimented with my regimen. I used to take them all together, but now I split them up.” Likewise, another female participant also adjusted her medication schedule to reduce the side effects. In addition, she shared this strategy with others who were confronted with this problem. “I have told other people about it, and they have tried it, and I think it has helped them as well. Something about the three of them together for some people causes nausea.” The participants commented that social support from variety of sources (support groups, friends, family) was an important factor in assisting them to adhere to their drug regimen. A male participant stated, “The support group has helped a lot. You know you get that camaraderie feeling, and I hear what other people have

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gone through.” Another male participant identified his friends and the Internet as primary sources of information and support. He stated, “I had peripheral neuropathy pretty bad. The only way I could work through it was on the Internet. They had a discussion group, and one of the things I got was that exercise really helped so I was happy.” Furthermore he stated, “Educating myself is as powerful as the medicine and the exercise and the vitamin therapy. I have to understand how to take care of myself the best I can.”

Furthermore, this participant observed that some of his HIV-infected acquaintances did not alter their lifestyle and continued to exhibit behavior that was detrimental to their health. He stated, “They wanted to maintain a life that they had before (drugs, alcohol), but you got to remember, this disease can’t handle that. A lot of them weren’t even taking their meds.” The participants experienced a positive response to treatment and thus expressed hope and optimism about their futures; combination therapy offered them a chance at longevity. A male participant stated,

Quality of Life The participants viewed the treatment as life enhancing, thus offering them a renewed life of quality. All of the informants in this preliminary study stated that their disease progression was halted or slowed since they initiated combination therapy. One male respondent experienced a dramatic response to treatment and to subsequent feelings of wellness and normality. He stated, “I attribute my salvation to the protocol. One of the best things that I can say is I feel normal. I mean, I had forgotten what feeling normal was like. I feel normal!” Likewise, a female respondent shared that she experienced a significant improvement in biological markers. She stated, “I went from a significant viral load to undetectable. I was like an AIDS poster child thing, nothing bad, all happy. It was very quick. It was like within 3 months or something.” Another female participant found that she experienced increased energy and weight gain. In addition, she experienced no opportunistic infections or hospitalizations as she had so frequently experienced in the past. She stated, “It improves your energy level. Prior to going on the medicine, I suffered with pneumonia; I got pneumonia quite frequently. I haven’t been ill at all.” An enhanced quality of life gave the participants an opportunity to reflect back on their lives. A male respondent stated, You have to go back into your life, and you have to search and reflect and try and see what is bad in your life and take that out of it. I try to keep an inner peace inside of me.

I’m carrying out my plans. When I first became infected, there was that question. At the time I was infected 2 years ago, people were dying in 10 years, and I wanted to know [his life expectancy]. With better therapies, it looks more like I just may be around to retirement age. A female respondent stated, “I never put my hopes up that there would be a cure, but I felt that things would get better. I’m optimistic that things are going to be ok.” The improvement in the participant’s heath gave them a sense of more control in combating HIV. A male participant stated, “I am living with it, not it dominating me. I run the program. I run the show.” Similarly, a second male respondent stated, “If you let it bother you, it’s like anything else, it can. And you can’t let it. You need to work around it, and you can’t let it run your life.”

Discussion Even though the sample size for this pilot study was small, the informants provided insight into living with combination therapy. Making decisions about treatment takes time, and many factors enter into the decisions that one makes. For these informants, the decision to begin combination therapy involved more than getting a prescription. They made a deliberate decision. These findings affirm Williams’s (1997) description of adherence. Williams views adherence as the end product of a dynamic process. Current understanding indicates that PLWHIV will need to continue this therapy for the remainder of their lives. Thus, involving them in the decision making of initiating

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combination therapy is an important aspect of their care. Involvement on the part of patients is also necessary because health care providers cannot know the life circumstances that patients will weigh when deciding about a possible therapy (Lewis, Lasack, Lambert, & Connor, 1997). However, the investigators did not ask participants to identify personal characteristics that influenced their decision making. For example, questions could have been asked related to the ways in which their experience with previous drug regimens or the influence of social support or work influenced decision making. Patient characteristics are important considerations when one is working with a patient to develop an individualized plan (“Long-Term Treatment,” 1998; Williams, 1997). The findings show that PLWHIV are resourceful and use multiple sources for obtaining information. The informants indicated that they needed the professional’s experience and expertise as well as information provided from other sources to make decisions. The respondents in this study were knowledgeable about available resources on HIV infection because they were not newly diagnosed individuals. Although this characteristic may be unique to this particular group of informants, health care providers need to recognize that they are not the only sources of information that patients use. This finding also underscores the need for an ongoing patient-provider relationship because questions and issues will arise as patients take these medications (Lewis et al., 1997). Williams (1997) points out that characteristics of the health care provider contribute to whether PLWHIV are adherent or nonadherent to their therapy. The findings demonstrate that adhering to combination therapy is both stressful and difficult. The informants described how the drugs intrude into their lives. Side effects can be particularly troublesome. They, along with taking the medications, serve as reminders that one is living with HIV. The difficulties that one can have managing a regimen of combination therapy can lead to nonadherence. The informants provided insight into factors that influenced their ability to adhere: for example, a desire to want to take a drug holiday, side effects, sleep, work, forgetting to take medications with them when they go out. These

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individuals pointed out the realities of living with medications that must be taken as prescribed. When PLWHIV are taking combination therapy, the expectation is that they will adhere to the regimen. However, as these informants pointed out, adherence can be difficult, and the side effects can be a burden. Despite the challenges of taking combination therapy, this study provides preliminary evidence that combination therapy offers the benefit of an enhanced quality of life, as well as a second chance at life. Quality of life has become even more important because the length of survival is increasing (Holzemer & Wilson, 1995; Mellors, Riley, & Erlen, 1997). Although quality of life in PLWHIV has been described (Cleary et al., 1993; Nunes, Raymond, Nicholas, Leuner, & Webster, 1995; Ragsdale, Kotarba, & Morrow, 1992) and has been examined in clinical trials (Wu, Revicki, Jacobson, & Malitz, 1997), no published study has described the relationship between adherence to a complex regimen and quality of life from the perspective of the person who lives with the regimen. All aspects of one’s quality of life are affected as a person lives with HIV infection (Chesney & Folkman, 1994). Part of living with HIV infection is adhering to the complex medication regimen. Although the informants in this study described some of their struggles with the medication regimen, they also looked on the positive side, noting that now they were not sick and that now they can make and implement plans. Even though taking combination therapy complicated their lives, the participants believed that they were better off with the drugs and thus continued to take them. The informants recognized that their options were limited without combination therapy. Combination therapy offered them a second chance at life. Yet, Rabkin and Ferrando (1997) write that this second chance creates a paradoxical crisis for PLWHIV. There may now be a need to restructure one’s life. There are now new questions and issues that have to be addressed. However, this pilot study did not ask informants to describe the impact of this second chance on their lives, and further research is needed to investigate this phenomenon. This study also provides some preliminary evidence to suggest that an intervention that targets habit formation and problem solving may be appropriate to

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promote adherence. As the informants described living with combination therapy, they identified the development of a habit. Because of the need to take these medications as prescribed, habit formation was very important so that they did not forget. Others described some creative strategies that they used when encountering new situations or managing side effects. They encountered a problem and needed to find a solution. Some looked to others for guidance with these new situations. Having information enabled them to solve problems. Research has shown that when PLWHIV have information about their medication regimen, they are more likely to adhere to their regimen (Eldred, Wu, Chaisson, & Moore, 1997; Lewis et al., 1997).

Implications The findings from this preliminary study suggest implications for both research and practice. There is an urgent need for more research on adherence and the outcomes of adherence as related to PLWHIV who are taking combination therapy. This study needs to be replicated with a larger and a more diverse sample of PLWHIV to determine if the issues related to adherence are similar across this patient population. A larger study would enable researchers to explore the relationship of factors such as social support, medication side effects, experience with other drugs, history of successful coping with other life challenge(s), long-term survivors with no history of illness, health prior to treatment, and denial of HIV status on adherence. Triangulation methodology may be useful to more fully understand the relationship of patient, provider, and medication characteristics to adherence to combination therapy and its outcomes. Specifically, further research is necessary to understand the interrelationship of adherence and quality of life. How does adherence influence quality of life? Is adherence a positive or negative factor when describing quality of life? Does the nature of one’s quality of life influence the degree of adherence? If interventions are designed to improve or sustain adherence, do they also affect quality of life? There is need to conduct intervention studies because there are no published intervention studies on

adherence to combination therapy. There are only a small number of intervention studies with other chronic disorders that use a randomized, controlled design with follow-up (Haynes, McKibbon, & Kanani, 1996). Those studies can provide the foundation for designing an intervention study to promote adherence to combination therapy in PLWHIV. Based on what the informants in this pilot study said, one possibility for an intervention study is to design an intervention that uses a habit-training and problem-solving approach. This study could be based on social cognitive theory and theories of self-efficacy. From the practice perspective, health care providers need to recognize that a partnership with the patient is very necessary. To promote good adherence requires that the patient be involved in the decisions. When that occurs, there is a greater likelihood that the patient will be successful. Therefore, health care providers will need to take time with their patients so that the patients feel free to ask questions and to seek information. In addition, as these participants indicated, there needs to be ongoing support available to the patient. Having the telephone number of the health care provider and knowing that one can call with questions provide a means of reassurance to those who are managing this complex regimen. Health care providers need to work with the patient to individualize the plan for medication taking (Lewis et al., 1997; “Long-term treatment,” 1998). This means that the health professional needs to have the patient describe the living arrangements and the usual daily schedule. Together, they need to draw up the plan that considers the everyday events that occur and that also has some latitude so that the patient can handle emergency or unplanned situations. Nonspecific plans or ones that are imposed on the patient are less likely to promote adherence because they are not individualized to the patient’s situation. Finally, health care providers and patients need to recognize that the clinical indicators are only one measure of the effectiveness of combination therapy. Although the informants in this pilot study pointed out that they had their life back, they were speaking about more than their physical health. Thus, quality of life is an extremely important consideration. Because quality of life is a subjective judgment, PLWHIV who are

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on combination therapy are the only ones who can say whether taking these medications has increased their well-being and satisfaction with life (Dale, 1995).

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