Egan, James E MPH*; Netherland, Julie MSW, MPhil*; Gass, Jonathon MPH*; Finkelstein, Ruth ScD*; Weiss, Linda PhD*; for the BHIVES Collaborative
Programs that integrate medical care and drug treatment have shown great promise in improving health and substance use-related outcomes. The overlap in the epidemics of HIV and substance abuse makes HIV-infected drug users a population likely to benefit from the integration of primary care and drug treatment. The approval of office-based buprenorphine/naloxone (bup/nx) treatment in 2002 has provided an opportunity to integrate addiction treatment and medical care for people living with HIV.1,2 Although several studies have explored the benefits of and barriers to bup/nx treatment and integrated care,3-12 little is known about patient satisfaction and preferences.12-16
The perspectives and satisfaction of patients are increasingly seen as essential indicators for assessing treatment effectiveness.17 Understanding the experiences of HIV-infected patients in bup/nx treatment is particularly important because it provides insight into the feasibility and potential benefit of integrated care. Qualitative methods are particularly useful for investigating the individual attitudes, experience, sensitive topics, and for exploring areas where little data exist. As such, there is a strong history of using qualitative methods in HIV, drug use, and drug treatment research.18
As described more fully in this supplement19,20 from 2004 to 2009, the HIV/AIDS Bureau of the Health Resources and Services Administration (HRSA) funded, through its Special Projects of National Significance, the development of demonstration programs that integrated HIV care and bup/nx treatment for opioid dependence at 10 sites across the United States. HRSA also funded an Evaluation and Technical Assistance Center (the “Center”) to coordinate the multisite mixed-method evaluation, provide clinical and evaluation support and technical assistance, and promote dissemination of findings. As a complement to the multisite evaluation, HRSA provided supplemental funding for a qualitative study to further investigate experiences and satisfaction of HIV-infected individuals in integrated care programs. This article provides the findings from this study.
Semistructured face-to-face interviews were conducted with 37 HIV-infected patients who had enrolled at one of the participating HRSA-funded HIV care and bup/nx treatment demonstration projects. For this analysis, which focuses on perceptions of bup/nx, we excluded four interviews from patients from the comparison arms that had never been induced on bup/nx, leaving a sample of 33. All interviews were conducted using a semistructured interview protocol by one of three Center staff, each of whom were trained in protocol administration. Center (rather than local program) staff conducted the interviews to reduce interview variability and so that interviewees would feel comfortable offering positive and negative opinions regarding the bup/nx program.
The interview protocol included questions on the patient background and drug use history; attitudes and motivations regarding cessation of use, perceptions of bup/nx, and bup/nx treatment; experience with other treatment modalities, including methadone; advantages and disadvantages of integrating substance abuse treatment into HIV care; opinions on ancillary services, including counseling and groups; and perceptions of their HIV-related, physical, and mental health and the overall quality of life before and after initiating bup/nx treatment. This protocol was designed to guide but not limit the discussion; interviewers had freedom to explore additional emergent themes.
Study patients were recruited by, and at the discretion of, local project staff. To be eligible, individuals had to be enrolled in the evaluation and to have participated in bup/nx treatment, even if temporarily. Interviews were conducted in private rooms at the study site. Patients received a $25 gift card as reimbursement for their travel and in recognition of the efforts made to attend the interviews. All study protocols were reviewed by The New York Academy of Medicine (and local when required) Institutional Review Board; written informed consent was collected from each participant. Interviews lasted approximately 1 hour, were audio-recorded, and professionally transcribed.
The first five transcripts were compared with the audio files to assure transcription accuracy. After removing any personal identifying information, transcripts were entered into NVivo (Version 8.0; QSR International, Doncaster, Australia) for coding and analysis. Using a grounded theory framework,21,22 the research team developed a preliminary coding scheme that incorporated themes from the interview guide, interviewer perceptions, and the review of the first five transcripts. Using these preliminary codes, the first three transcripts were coded by individual team members. The team then met to compare coded transcripts, paying particular attention to coding consistency and discrepancies. This process, an essential step to assure that equal attention is given both to the overarching hypotheses as well as emergent themes, led to a finalized code book, which included each code, its definition, and a textual example. The rest of the interviews were then coded by the lead author and another team member (J.G.). In addition to full transcript reviews, the coded text was used to identify the major themes, paying particular attention to both the symmetry and discord within the narratives. In the quotations included below bup/nx is described as buprenorphine, bup, or suboxone depending on the patient preference.
The 33 interviews included in this study were conducted with patients in 7 of the 10 demonstration sites (all sites were given the choice to participate). As such, the sample is geographically diverse including individuals located in the south, west, northwest, northeast, and midwest of the United States. The sample (see Table 1) was primarily male (66%), black (56%), and older (mean age of 44 years). Patients reported having used heroin for an average of 22 years, and nearly two thirds (63%) reported previous experience in methadone treatment. Just over one fourth (27.3%) also reported homelessness at baseline. Characteristics of the qualitative sample were similar to those of the full sample; however, participants in the qualitative study were three times less likely to report opioid use while in treatment (P < 0.01). The better drug use outcomes are likely the result of a sampling bias as well those most likely to participate in the qualitative interviews were individuals who were connected to care. Furthermore, it is possible that site staff responsible for recruitment may have been more likely to select the most successful clients.
Satisfaction and Perceived Benefits of Buprenorphine/Naloxone
Patients were highly positive in describing their overall bup/nx experience:
“I love it. Absolutely. This stuff's like a frigging gift from God, Suboxone, it is, I love it. The shit works so good.”
“It was like a big yoke being lifted off my shoulders. It means freedom to me.”
They reported high satisfaction with the pharmacologic effects of bup/nx, including elimination or reduction in cravings and its effectiveness in blocking the euphoric effects of other opioid use. This combination was seen by many as essential to their sustained opioid cessation. Several patients reported testing the effectiveness of bup/nx by using heroin while taking it. Most described a relief in knowing that further opioid use was simply a “waste of money”:
“With the bup, within a matter of days you're not [feeling the heroin], well I mean instantly you won't feel it, but within a matter of a few days, maybe five days, you're not having cravings, you're just feeling normal. You just get up and you feel all right. And you don't think about the dope, and you don't miss it, nothing. The shit works great man, it does.”
“I think the greatest part of it is knowing that it's an opiate blocker. Why am I gonna waste my money? Why am I gonna go out and blow my money on a bag of dope when I know it isn't gonna do a God damn thing for me?”
The experience of returning to a “normal” life after initiating bup/nx treatment was widely shared among this patient population. Patients described having more energy, a clearer head, and an increased ability to focus on daily activities and positive life issues. This sensation seemed to take most by surprise and, even months after initiating treatment, was considered among the most salient effects of bup/nx:
“With buprenorphine you just feel like you're just normal. It's kind of like it takes me back to before I had ever done opiates.”
A number of patients compared their bup/nx treatment with previous methadone treatment, noting several advantages of the former, including the effectiveness of the bup/nx, the absence of side effects (especially feeling high or sedated), the setting within which it is prescribed, and the significantly less stringent rules regarding treatment:
“Well methadone made me sick. I couldn't hold it. So they said ‘we going to lower the volume/’ Well okay, you lower the dosage. It didn't hold me so back to heroin I went. But then I found the [bpn/nx] program. This whole, new light, whole, new everything, whole, new day.”
“Actually I don't feel like I'm on any drug when I take the Suboxone [compared to methadone]. I don't nod. I'm not speedy. I'm not sleeping. I feel good when I'm on the Suboxone.”
“I'm a big [methadone] advocate but in the meantime I was, I was trapped in that stuff. It was depressing that [I] had to come to that clinic every day. I don't like [going] there. Whatever you doing, you got to make sure you get here before they close because if you [are] there at one minute after, they close the door. They won't dose you and then, you know, I panic I'm going to be sick. It was hard. I did that for 10 years. I got tired of it. But these little pills, I have two of them, I have two eight milligram. I have them and I pop one in my mouth and I wait for it to dissolve and I be doing stuff, and I forget to take the other one sometimes I feel so good. I don't feel loaded like with methadone.”
Impact of Buprenorphine/Naloxone Treatment on Health and Quality of Life
Consistent with results reported elsewhere,23 patients reported significant improvements in their health and quality of life. Expanding beyond the narrative of feeling normal, a number of patients described other radical changes in their lives, including an overall increase in hope:
“It finally got to the point where, I never thought I could get clean, man. I never thought I could get two months clean. And it feels good; you know what I'm saying. Restore hope in my life you know. I'm just blessed and grateful man.”
“Seemed like when I got on the program, everything just came - the sun came out… this is so cliché, but I started smelling the flowers. You know, I just, I started, loving myself, I started I don't know, I just - well yeah I do know. I started loving myself.”
There was also a sense of increased motivation and capacity to make significant life changes, including increased responsibility for one's self and others and a better ability to deal with adversity:
“I just go so much more motivation and energy to things, you know? That I never used to do before. The biggest thing is having my family back… They're very supportive. They all say, ‘We've got the old Julie back.’”
“When the adversities come up, they're not as big as they seemed to be when using the heroin.”
This re-engagement with life involved changes in daily activities, some seemingly small, including time in the morning for coffee and breakfast, and some large, including a return to stable housing; renewed relationships with family and friends; and reinvestment in previously abandoned activities such as travel, employment, and education:
“I put it this way, if it wasn't for Suboxone, I think I'd be dead, truly. I mean, as a matter of fact, it got me back to working. I work on elder care, I'm a home care giver. It got me to doing that. I got my apartment, my son. He's always loved me, he respects me a lot more, you see what I'm saying? It just changed a lot of things in my life. I can see clearly now there's-as a matter of fact I start seeing hope for myself. And I started feeling I could fight [HIV] and there's nothing that I can't accomplish. This came from this orange pill. Ever since then my life has changed… If it hadn't been for Suboxone, honestly, I don't think I'd be here. I don't think I even want to be here so that's a heaven sent.”
“I think about going to the beauty shop and going to the movies and eating ice cream. I'm like ooh, this is fun… I've been traveling. I'm going to see my children, and grandchildren.”
“A lot of things got better in my life [since starting bup/nx treatment]. I mean, spirituality-wise, my relationship with my family, my relationship with my girl. I'm going back to school in January. I'm seeking employment, so a lot of things have gotten better; my thinking, my self-esteem, you know, overall, around.”
“I was done. Like I say, I tried to get sober before. I've never seen two years of sobriety. I was homeless. I didn't have a job. I had warrants. I hadn't seen my doctor in I don't know how long. I had hepatitis C. Since I've got into this study, I've taken care of the warrants. I had housing. I started out doing community service. [Now] I'm working for an alternative health clinic… Two years ago I was a strung-out junkie sleeping under a bush.”
Ability to Self-Regulate Use of Buprenorphine/Naloxone
Another appreciated benefit to bup/nx treatment was a perception of increased agency in one's substance use treatment, including input on bup/nx dose setting, medication scheduling, and overall treatment goals. This was radically different from the highly structured environment of methadone treatment. Patients described highly nuanced abilities to self-manage bup/nx, including self-induction and treatment planning. Generally speaking, patients who disclosed this self-management to their physicians reported provider acceptance, which is consistent with the “harm reduction” approach used by many physicians in HIV medicine:
“I don't need to go to a detox and then be re-inducted and all of that shit. … I'll just stop using the dope and start taking Suboxone again.”
“I only take buprenorphine for maybe 14 days at the most, it depends on how big my addiction is when I have it, how long I take it - but I've always used less than ten days of buprenorphine to kick because I don't want to replace it with another drug.”
“Once I knew I wasn't going to be able to continue paying for them [bup/nx], I cut them in half, and I would take a pill and a half a day. And then, when I started getting a little bit lower on them and I only had like ten left, then I would take them [only] when I would get the cravings and the urges.”
Patients reported that they were able to both successfully self-induce and detox, from bup/nx without suffering from withdrawal symptoms. Most saw this as positive, particularly when compared with experiences on high methadone doses:
“If I were to stop the buprenorphine cold turkey, it's easy. I mean it's like a couple of days that, ‘cause you know your body's like getting rid of a substance, it's like I feel a little bit weak, but there's not really much of what I would consider like I was kicking anything. Getting off heroin, you're going through like serious withdrawal. Getting off methadone is worse, it's terrifying.”
“I had to stop, because I had a - I had a major operation. I had a bowel rupture. So I had to go on OxyContin or Vicodin, something. But then I picked it [bup/nx] up myself again.”
Integrated Buprenorphine/Naloxone Treatment and HIV Care
Many patients associated bup/nx treatment with an increased engagement with their HIV care and overall health. Several also reported increased adherence to HIV care appointments and antiretroviral regimes after enrolling into bup/nx treatment programs:
“[Bup/nx] makes me take care of [my HIV] more. If I have to take my buprenorphine every morning, then I have to take my medicines every morning. I remember and I can take it all together. I eat, take my vitamins, take my meds, take my buprenorphine, and then I go.”
“I take my medicine now. When I wasn't on buprenorphine I wasn't taking medicine. That's why I stayed sick. But on buprenorphine, me not being sick, makes me want to stay well and take my medicine like I'm supposed to. I make my appointments like I'm supposed to. I didn't do any of that until I got on buprenorphine.”
“If I was still under the, the addiction of the drug in the morning, I would jump up in the morning and I would forget about the HIV medicine and to go out and get that medicine, you know what I'm saying. So you know, that would be more important, you know, you would probably tell yourself, oh, I'll go out here and get this here and then I'll come back and take this here and then when you get out there you don't come back and you just miss your medicine, you know. [Since starting bup/nx treatment] I'm very good about taking my medicines. I don't, I don't miss it. I don't never miss it.”
Furthermore, patients were highly receptive to integrated bup/nx and HIV care. For nearly all interview participants, this program represented a first opportunity to receive opioid replacement therapy outside of the traditional drug treatment environment. There were advantages related specifically to the HIV care setting and others that reflected the wider context of office-based delivery of bup/nx. Patients noted the generally better atmosphere and enhanced provider-patient relationships. Office-based treatment facilitated a dislocation from drug using networks, which were encountered daily during methadone treatment visits. Some patients appreciated an environment where they could safely disclose both their drug use history and their HIV status and connect with others who had struggled with the same issues:
“Now they know I got [HIV], and it's like nothing to them, you know what I mean. They treat me nice, you know. I mean they're all, you know, here to help you.”
“I'm more around people that are like me. You know…with the HIV and the drug addiction and then we can talk with each other about certain things. Especially on the Suboxone.”
Another benefit of integration was the convenience of being able to receive all of your care at one institution, which was particularly helpful to those with jobs. In fact, integrated care was perceived by some participants as facilitating improvements in both substance use and HIV treatment. Many believed their care to be more comprehensive. Contextualizing their substance use treatment within their HIV care also afforded patients the opportunity to build strong patient-provider relationships:
“For me having it in the same place worked out well. I can get everything right here in this one facility, without having to run over here and over there.” “It couldn't be better…and here's the reason why: if it's something with either one of them [drug use or HIV], right, by your medical people and your program [being] in the same building, … I can always go to my doctor … and find out what combination, how this is working with this and that.”
In contrast, a minority of patients preferred that their substance use treatment and HIV care remain separate. For one man, going to one place for medical care and another for drug treatment provided him more activities with which to structure his days:
“For me, it gives me something to do, versus, you know, if I had everything at one spot, then I would get bored. You understand what I'm saying? I get everything in one stop, and then I leave. And okay, well, where do I go next? You know?”
Although not common, some had concerns about integration included the feeling that offering drug treatment may be too burdensome for HIV providers or that providers may be unwilling, ill equipped, and/or lacking the skills needed to provide quality substance use treatment. Others preferred that their providers focus on HIV care and not be distracted with other diseases or substance use treatment:
“I think honestly, you should keep it separate. Because I feel that chemical dependency counselors should prescribe [bup/nx]. They stress that you come to the meetings, learn more about it, get you to see how the medicine is working. They stress to you-make groups. [My HIV provider] is a good physician, but I think they should just keep it separate from that.”
Counseling and Levels of Support
Many of the patients in the study had a number of comorbidities, including mental health issues, and had led chaotic lives, including limited work experience, periods of homelessness, and repeated incarceration. Individual and group counseling as well as case management and other supportive services were seen as necessary supplements to the bup/nx itself. A number of these patients viewed bup/nx as their treatment for opioid dependence, whereas counseling was the treatment for their overarching psychosocial issues. Many patients described the importance of having a personal connection with their counselor. Strong and meaningful relationships were preferred by most patients:
“To me, is not just Suboxone, it's also the - the [bup/nx nurse/counselor].”
“It ain't just the pill it's [also] the follow-ups. You have follow-ups to see what's the problem why you can't keep clean or what, let's work on this or let's work on that.”
“The pill probably would have been enough but, some people don't have a strong constitution you know. They probably need a little bit of a push on the side.”
Patients also described the benefits of sharing the treatment experience with others in group counseling sessions. By learning from other patients' experiences with bup/nx, many were able to reflect on their own treatment:
“So these meetings that I go to, oh they mean a lot. Big-time, oh yeah. You know, because I'm not the only one. I am not the only one that's in this predicament. There's a lot of other people and we share with each other you know, what's bothering us and you know, what could happen and it's a good thing. It's a real, good thing.”
In contrast, a few patients described counseling and group therapy-particularly if it was mandatory and/or intensive- as unnecessary and overly burdensome:
“I said, you think I'm going sit here all day long in groups, I could have come in, got dosed and then went home, you know. I mean, okay, so if it's not covering me completely and I feel a little off, whatever, I'll just lay it down and watch TV. No, they wanted me to stay there all day for groups. So I said, well forgot it, and I went and got high.”
Patient Concerns With Buprenorphine/Naloxone
Induction and Fear of Withdrawal
Bup/nx induction is a paramount concern to both patients and providers. In discussing their induction experiences, patients expressed initial trepidation; surprise in how quickly bup/nx started to work; amazement at first feeling the pharmacologic effects; and then, in retrospect, how simple the process actually was. The biggest distress to patients, particularly for initial inductions, was the requirement that they be in withdrawal. The intensity of the fear of withdrawal and being sick was described as a significant factor that may dissuade some from considering bup/nx as a viable treatment option:
“The drug users-I think they're a good portion of them that don't want to be bothered with Suboxone, because they know that they have to come down. They know that they have to go in some-some withdrawal for some period of time before they can go on it. And they don't want to do it, or they tried to do it before, and they didn't make it.”
The difficulty of tolerating withdrawal was, for most patients, a substantial obstacle to overcome, sometimes necessitating multiple induction attempts. The contrast between the physical discomfort of withdrawal and physical comfort of bup/nx was noted by several patients. Of particular importance to the patient experience of bup/nx treatment, as related to induction and withdrawal, is the process (as noted subsequently) of developing a trust in the medication. This begins with overcoming the fear of withdrawal and believing that the medication will work over time:
“So I got to the program, and she [bup/nx coordinator] told me the things that I have to do before I can get on the program. One was I had to get dope-sick. Oh my lord, first couple of times I couldn't manage. I couldn't get that dope-sick you know. I just couldn't… Because my trust wasn't in those pills, you know what I'm saying? …but eventually, cause I ran out of options- ran out of money, I decided forget about it. I got dope-sick, I got real dope-sick. As a matter of fact, I didn't use for two days, cause at that point, I was trying it cold-turkey…. I jumped on the train, I came, I sat in the office, she gave this pill, I stuck it under my tongue, and 20 minutes later it's amazing. It was a miracle.”
“And like an hour later, it eased my stomach pain and I didn't have the runs. that's the first thing I noticed. Now the other thing was that I wondered how long is this going to last, this one pill. And I was-even though I had something to help me, I was worried about the next day or how long was it going to last.”
Relapse and Other Drug Use
Despite high satisfaction with bup/nx's ability to block cravings, several patients reported relapsing to heroin. Even when bup/nx works pharmacologically, external factors, like problems with family, can lead to relapse:
“And a bunch a shit went down with that kid, and, you know, I just, I got really fucked up. And I wasn't takin' my psych meds either for a few days … And, you know, just getting stressed out the way I did triggered me to get fucked up. You know, I started getting paranoid, and I was really angry, and I made a decision to use. It wasn't that the Suboxone wasn't working, because it was, you know, I made a conscious decision to use.”
Although most patients expressed appreciation for “feeling normal,” for some, “normal” was too difficult, particularly considering past trauma:
“It was easy to hide and easy to feed into a lot of low self-esteem and unworthiness and stuff like that [on drugs]. … Well see the bup didn't allow me to mask what was going on. … I mean, the cravings were down and I wasn't like craving drugs so much but I was feeling feelings. So I don't want to feel feelings, so fuck the bup, and let me get me some dope so I can hide, medicate so.”
Although many patients appreciated the ease of withdrawing from bup/nx, ironically, some were concerned that this ability to go off and on bup/nx with little discomfort may potentially facilitate repeated periods of drug use. In fact, individuals described how they, or others, would self detox from bup/nx so that they could return, at least temporarily, to opioid use:
“The one critique I would have about buprenorphine is … knowing the fact that there's not going be so much of a physical consequence coming off it, it does make it a little bit easier, you just kind of keep that in the back of your head as an option…Like I said, that's really the one thing that I think, the one thing that I could foresee being a problem with people on buprenorphine. It is just the fact that it's so easy…to come off of it. …To where it's like…I could see a lot of people like getting on Buprenorphine maintenance program just as a way of kind of doing a detox every once in a while.”
Concerns about Buprenorphine/Naloxone Maintenance
Despite widespread success of bup/nx, several patients expressed a desire to taper off of the medication perceiving it as a “crutch” or another kind of drug. For many, this therapy was a step toward the ultimate goal of no longer being on any replacement therapy. Others thought of bup/nx as similar to any medication for a chronic condition. These patients were more interested in longer-term maintenance therapy and were sometimes worried that they would be forced off before they were ready:
“I'm so scared…cause I'm going to succeed in the program, but what am I going to do without it? I mean, you know, that's like a safety net for me. I'm just, I'm not ready to get off yet, just put it that way.”
“I'll probably stay on a small dose the rest of my life. That's how much I believe in it. It's going to be like me taking my Suboxone pill, per se to somebody taking their high-blood pressure pill.”
Perceived Buprenorphine/Naloxone Side Effects
Very few patients (total of five) reported experiencing any discomfort or significant bup/nx-related side effects. The most common was a slight “speediness” or euphoria when first induced. Some also experienced moderate gastrointestinal issues. These effects generally subsided within a few days or with slight dose modifications:
“Like speedy, and everything was like fast. I was moving in fast motion. And so then we lowered it. And now I'm on two pills a day. But I think Suboxone is a wonder drug actually, because I'm just normal. I'm not speedy. I'm not sleeping all day long.”
“It [bup/nx] gives you a little lift, a little energy lift. But then you just mellow off and just go on and do what you gotta do. But, as far as feeling high or anything, no.”
Although several patients reported relapses (to both heroin and cocaine) and reinductions (both home- and office-based), only one patient in this sample withdrew from bup/nx treatment because of dissatisfaction. In this case, the patient did not feel that his dose was sufficient to keep him from feeling dope-sick toward the end of the day. Frustrated with his unsuccessful attempts to have his dose increased, he opted to transfer to methadone treatment:
“Anyway, I believe I said that the pill would work, but I wasn't getting the proper dosage that I thought that would help me, and I tried to explain to the doctor but they never would up the doses so I couldn't, I couldn't deal with what I had so went to the Methadone Program.”
Our findings suggest that diversion and unsupervised bup/nx use was not of primary concern for this sample. Bup/nx was often described as too personally valuable to sell or share; many patients paid particular attention to keeping it safe. In addition, patients reported because bup/nx did not make people high, its street value was limited to those hoping to avoid withdrawal:
“I don't do that [share bup/nx]. I try to be able to have what I need for myself.”
The diversion described by participants in this study (including both first- and second-hand accounts) often seemed motivated by notions of altruism rather than economic gain. In general, diverted bup/nx was used to prevent withdrawal. For example, one participant explained that bup/nx was selling on the street for $8 a pill. When asked why people were buying on the street, she responded:
“They're buying it so they're not dope sick. If they can't find dope, there will be the Suboxone.”
Integrated bup/nx treatment and HIV care has the potential to significantly expand access to drug treatment for HIV-infected individuals addicted to opioids. Despite evidence suggesting the effectiveness of this treatment, little data exist on the patient perspective of bup/nx and/or integrated drug treatment and HIV care. These findings suggest that bup/nx is a viable and often preferred option over methadone as an opioid replacement therapy.
Patients were overwhelmingly satisfied with the pharmacologic effects of bup/nx, including its effectiveness in blocking cravings and controlling opioid use. Patients were also highly satisfied with the outcomes associated with their treatment including feeling normal, decreased opioid use, and an overall improved health and quality of life. As compared with experiences with methadone, patients reported a highly nuanced ability to self-manage their own treatment by making decisions around their dosing schedule and even going on and off bup/nx for periods of time. Some patients did this with knowledge and consent of their medical providers, whereas others did not. Providers may want to become knowledgeable regarding the bup/nx treatment trajectories and how possibly repeated transitions may need to be integrated into their program design, assessment of treatment readiness, and patient goal setting/treatment objectives.
Despite overwhelming satisfaction with bup/nx, patients expressed concerns that can be used to guide future patient education and treatment. For example, induction onto bup/nx was often worrisome to patients. Although it was ultimately seen as a fairly simple process, issues related to opioid withdrawal and trusting the long-term effectiveness of this new medication were of particular concern for patients. Creating opportunities for bup/nx patients to share their experiences of induction with prospective patients may be one way to address these concerns.
The comparisons to methadone treatment were frequent and multidimensional. Many patients remarked on the pharmacologic advantages of bup/nx over methadone, including fewer feelings of sedation, grogginess, and unwanted “highs.” Bup/nx was, for many, a first opportunity to receive substance abuse treatment in an office-based environment with sometimes radically different treatment philosophies and regulations than patients were used to. In general, patients preferred the office-based setting because it offered greater autonomy, less burdensome scheduling, and a distinct separation from drug-using peers as compared with methadone clinics. Consistent with federal regulations,24 counseling was offered in all programs and seen as an important, but not always mandatory, component of bup/nx treatment. Many patients felt they needed additional support from counselors or groups to deal with their continued psychosocial issues.
Patients reported increased engagement with health and HIV care, including adherence to scheduled appointments and antiretroviral medication regimes. Nearly all were satisfied with integrated HIV care and bup/nx treatment and with the environment within which it was offered. They found integrated care to be more convenient and believed it to improve the overall quality of both HIV and substance use treatment. An initial question in integrating care services was a concern that failure in one (opioid relapse or non-HIV adherence) may result in dropping out of care for both. Our findings suggest that this was not a concern for these patients. It should be noted, however, that providers and programs participating in the initiative were those with a particular sensitivity to drug use and may have an approach (ie, more strongly oriented toward harm reduction) that differs from some other HIV providers.
These findings are subject to several limitations, paramount of which is our focus on those patients successfully induced onto bup/nx. Although this elicited a wide range of perspectives, including diversity in experiences related to treatment program, geography, and life background, it means we heard from few people who did not choose, were never successfully induced, or who left because they were dissatisfied with bup/nx treatment. It is also possible that patients in our sample felt that telling us about their positive bup/nx experiences was socially desirable, although overall patients freely disclosed their concerns about the treatment as well as other sensitive issues and stigmatized behavior. Furthermore, although an attempt was made to recruit equally across programs, one third of the sample (34%) was located at one study site.
The findings are further limited by the small sample size and our reliance on convenience sampling; as such, the findings are suggestive rather than definitive. The programs from which these patients were recruited all received dedicated HRSA funding to design and implement these demonstration projects. Participant experiences may have been tempered by the specific structures of these programs, which were, in most cases, strongly anchored in a harm reduction framework. They were also receiving care in clinics that offered multiple services and had experience dealing with a variety of psychosocial issues. Experience may differ significantly in different types of settings.
These limitations acknowledged, it should be noted that the strength of this research lies in the rich contextualization and depth of understanding that qualitative findings can add to other research and practice. In this instance, the data provide important insight into the patient perspectives of bup/nx. This point of view, largely absent from the current literature, gives voice to those most directly impacted by the availability of bup/nx treatment and its integration into HIV care settings.
We thank the individuals who agreed to share their time and experiences with us and to the BHIVES sites who assisted with participant recruitment, scheduling, and management.
© 2011 Lippincott Williams & Wilkins, Inc.