Qualitative study of patients’ decisions to initiate injectable depot buprenorphine for opioid use disorder: the role of information and other factors

Abstract

Background

Depot buprenorphine can potentially address many limitations of other forms of opioid replacement therapy (ORT). This paper builds upon the concept of the ‘informed patient’ to explore individuals’ decisions to initiate injectable depot buprenorphine.

Methods

Data derive from a qualitative study of 26 people with opioid use disorder who were recruited from drug treatment services in England and Wales and interviewed within 72 hours of starting injectable depot buprenorphine treatment. Interviews were conducted by telephone, audio-recorded, transcribed verbatim, and analysed via Iterative Categorization.

Findings

Participants’ decisions to initiate treatment were underpinned by receiving sufficient information to trust depot buprenorphine; current treatment not meeting their personal needs or goals; frequently uncritical perceptions of depot buprenorphine; and restricted access to depot buprenorphine making recipients feel grateful. Overall, participants said they had enough information and knowledge to decide they wanted depot buprenorphine. However, dissatisfaction with current ORT, desire for better treatment, and depot buprenorphine’s limited availability seemed to hinder informed decision-making.

Conclusions

Whilst pharmaceutical products cannot solve the complex life problems often associated with opioid use disorder, we need to increase access to all ORT forms so that patients do not feel they have to rush into any medication without adequate preparation.

Keywords:

• Depot buprenorphine
• informed patient
• opioid replacement therapy
• opioid use disorder
• treatment decision making
• qualitative

Introduction

Opioid replacement therapy (ORT) is an evidence-based treatment that involves the prescription of approved medications (such as the opioid agonist methadone and the partial agonist buprenorphine) in conjunction with counselling and behavioural therapies to treat opioid dependence (Bell, 2012; Mattick et al., 2014; Nielsen et al., 2016; SAMHSA, 2018; Stotts et al., 2009). Historically, ORT medications have mostly been prescribed for daily consumption in liquid/linctus or tablet/film form, often under supervision in a drug treatment service or community pharmacy (Neale et al., 2019a). ORT can reduce non-prescribed opioid use, overdose, infectious disease transmission and drug-related offending (Bell, 2012; Mattick et al., 2014; Nielsen et al., 2016; SAMHSA, 2018; Stotts et al., 2009), but it also has shortcomings. These include the risk of patients becoming addicted to the medications themselves, high levels of treatment non-adherence and attrition, the stigma of being in treatment for an addiction problem, and restrictions associated with daily dosing (Harris & McElrath, 2012; Itzoe & Guarnieri, 2017; Neale, 1998).

In recent years, new medications for ORT have been developed. Depot injections and implants can now provide patients with a consistent treatment dose over a period of weeks or months without them having to attend services daily (Barnwal et al., 2017; Ling et al., 2010; Tompkins et al., 2019). Often described as ‘game-changing’ by clinicians (Lagios, 2021), these formulations cannot easily be diverted and have the potential to increase treatment adherence whilst reducing the treatment burden for both clinicians and patients (Neale et al., 2019a,b; Saunders et al., 2020). This paper focuses on treatment with injectable depot buprenorphine. The first injectable depot buprenorphine product (Sublocade) was approved by the US Food and Drug Administration for monthly administration in 2017 (Indivior, 2017). Subsequently, two further products (Buvidal Weekly and Buvidal Monthly) were approved in 2018 by the European Medicines Agency and Australian Therapeutic Goods Administration (Camurus, 2018a,b). Whilst there are formulation differences between Sublocade and Buvidal, they share the important characteristic of bringing an established oral/sublingual medicine to a new depot injection format that requires less frequent dosing.

Buprenorphine produces less respiratory depression and weaker intoxication than methadone or heroin, resulting in a lower risk of overdose, abuse, and side effects (Walsh & Eissenberg, 2003). Buprenorphine can also prevent withdrawal symptoms and reduce the desire to use illicit opioids; although it can precipitate withdrawal symptoms if taken by a person with an opioid dependence who has a full agonist in their bloodstream (Itzoe & Guarnieri, 2017; SAMHSA, 2018; Walsh & Eissenberg, 2003). As depot buprenorphine is a new formulation (albeit of a widely used medication), the evidence base is still emerging. Nonetheless, findings indicate that its safety profile is consistent with that of sublingual buprenorphine, apart from some mild-to-moderate injection-site reactions (Haight et al., 2019; Lofwall et al., 2018). Its therapeutic effectiveness and tolerability in both community and custodial settings are promising (Dunlop et al., 2022; Haight et al., 2019; Lofwall et al., 2018; Tompkins et al., 2019). Additionally, preliminary evidence supports the feasibility of inducting users of heroin-containing fentanyl onto Sublocade within a single day, which could significantly increase the therapeutic potential of depot buprenorphine in regions where fentanyl misuse is common (Mariani et al., 2021).

Qualitative studies have also begun to assess patients’ views and experiences of injectable depot buprenorphine. Findings indicate that people who use heroin are willing to receive the medication, particularly if it enables them to decrease their illicit drug use and facilitates their recovery (Tompkins et al., 2019). However, their willingness is complex and changeable, and appears to depend on a range of factors including the perceived effectiveness of the treatment, prior experience with buprenorphine (in sublingual or wafer form), and the potential for side effects (Matheson et al., 2022; Tompkins et al., 2019). For example, participants in one qualitative interview study conducted in Sweden (Johnson et al., 2022) identified ‘feeling normal’ plus greater freedom and ease of combining treatment with work and family life as important reasons for choosing depot buprenorphine. Conversely, concerns about switching to a new medication which was potentially unsafe when an existing medication was perceived to be working, insufficient information about depot buprenorphine, and feeling coerced into the treatment decreased participants’ willingness to accept and continue with the medication (Johnson et al., 2022).

Once in receipt of depot buprenorphine, qualitative research conducted in Australia has found that patients report less stigma and more free time due to fewer visits to services as well as cost savings related to not having to pay pharmacy fees for daily dosing (Barnett et al., 2021; Treloar et al., 2022). Despite this, some people in treatment have identified disadvantages relating to reduced support from services, less control over their medication dosing, and fewer opportunities to generate income by selling medication (Barnett et al., 2021). Qualitative studies from Europe have, meanwhile, found that people considering depot buprenorphine want accessible information about different aspects of the treatment (including its purpose, availability, pharmacology, evidence base, effectiveness, safety, side effects, administration, and dosing) (Neale et al., 2019b). Importantly, this information is desired in a range of formats (printed, verbal, and electronic) and from trustworthy sources (both healthcare professionals and people who have personally had the medication and can therefore speak from experience) (Johnson et al., 2022; Matheson et al., 2022; Neale et al., 2019b).

The concept of the ‘informed patient’ has been widely used, but also often critiqued, in healthcare literature (Dixon-Woods, 2001; Hardey, 1999; Henwood et al., 2003; McKinlay & Marceau, 2002). The term assumes that patients take responsibility for their health and proactively seek medical information, often by the Internet, to help them understand their treatment needs, shape their treatment preferences, and make treatment decisions. In theory, having access to good health information and being ‘health literate’ can empower people to discuss their treatment options within the doctor/patient encounter and enable them to challenge medical opinion when there are differences of viewpoint (Hardey, 1999; Henwood et al., 2003; McKinlay & Marceau, 2002). In practice, obstacles (such as limited access to the Internet, poor literacy, low levels of trust in information sources, and feeling unwell) can prevent patients from fully engaging with health materials (Graham & Brookey, 2008; Neale et al., 2019b; Rooks et al., 2012). Furthermore, structural barriers (such as lack of treatment options and power imbalances that mean patients’ views are overruled if they disagree with a clinician) can constrain patient decision-making even when they are well-informed (Dixon-Woods, 2001; Henwood et al., 2003).

Clinical guidelines on depot buprenorphine have emphasized that patients need to understand the potential risks, benefits, side effects and commitments involved prior to initiating the treatment and, for this, they should be given information in written form or using alternative communications methods if required with opportunities to ask questions (Lintzeris et al., 2019). Yet, there has been no detailed analysis of how informed patients receiving depot buprenorphine are in practice or how their knowledge about depot buprenorphine interacts with other factors when they make their treatment decisions. Responding to this gap, the aim of this paper is to explore patients’ accounts of initiating injectable depot buprenorphine to establish the extent to which they felt sufficiently informed and/or were influenced by other issues. Understanding how people make decisions to initiate depot buprenorphine is important in determining not only whether patients want or need better information but also how other considerations might affect and potentially constrain their decision-making despite the availability of good treatment information (Peterson, 2009).

Methods

Our data derive from an on-going qualitative longitudinal study exploring patients’ views and experiences of receiving depot buprenorphine. Key objectives of the study are to ascertain patients’ treatment decision-making processes in relation to depot buprenorphine; experiences of depot buprenorphine; features of depot buprenorphine that are liked and disliked; adherence and retention in treatment; and perceptions of depot buprenorphine effectiveness. A further objective is to provide insights into whether and, if so, how patients’ views and experiences of depot buprenorphine change over time. To this end, each study participant is invited to six semi-structured interviews conducted: i. within 72 hours of treatment initiation; ii. at one week post treatment initiation; iii. at one month post treatment initiation; iv. at three months post treatment initiation; v. at six months post treatment initiation; and vi. at twelve months post treatment initiation. As questions relating to patients’ decisions to initiate depot buprenorphine were asked during the first interview to maximise recall, the findings presented here are based on a cross-sectional analysis of data generated during the interviews conducted within 72 hours of treatment initiation.

Participants were recruited into the study between June 2021 and March 2022 from six community drug treatment services located in rural and urban areas of England (n = 4 services) and Wales (n = 2 services). All participating patients received a Buvidal injection within one of the six treatment services prior to being interviewed. Weekly and monthly Buvidal are each available in four dose strengths and both injections are administered subcutaneously from prefilled syringes using a 23-gauge needle. At the time of recruitment, the availability of Buvidal (the only licensed depot buprenorphine product in the UK) was limited, with local authorities in England and the Welsh Government only conducting early pilot schemes involving small numbers of clinic-based patients. To facilitate recruitment, the researchers asked Camurus to provide them with a list of agencies offering Buvidal. Three agencies responded positively and directed the researchers to the six participating community services which collectively produced an adequate pool of participants for data saturation across key topics of interest. Approval to conduct the research was obtained from King’s College London Psychiatry, Nursing and Midwifery Research Ethics Subcommittee (reference: MOD-20/21-15027) with some additional approvals secured from the participating treatment services.

All recruitment and data generation have occurred remotely. Author S.P. first contacted key clinicians at the participating services (by email, telephone, and/or video call), explained the study to them, and provided them with the relevant study documentation. He then asked the clinicians to both discuss the research with any of their patients who had their first Buvidal injection scheduled and give them copies of the study information sheet and consent form. If patients expressed interest in participating in the research, clinicians next asked for permission to forward their name and phone number to S.P. so that he could contact them directly to explain more. In total, S.P. received 48 names and numbers and managed to establish telephone contact with 37 potentially interested patients. At this point, S.P. double-checked that these 37 patients had received the study documentation, described the study to them again verbally, and answered any questions they had. Following this, 26 people agreed to join the study.

A time and date to conduct the first interview was agreed with each participant and informed verbal consent was audio recorded immediately prior to any interview starting. Participants were given a study number (01-26) and S.P. conducted all interviews by telephone. These followed a topic guide designed by authors J.N. and S.P. with input from J.S. and were audio recorded separately from the consenting process. Participants were invited to select either £20 cash or a £20 shopping voucher after each interview to thank them for their time. The initial (within 72 hours) study interviews lasted approximately one hour and covered the participant’s background; substance use; prior treatment experiences; knowledge of buprenorphine; knowledge of depot buprenorphine prior to starting Buvidal; decision to have Buvidal; experiences of having the first Buvidal injection; physical, emotional and psychological feelings since having the first Buvidal injection; satisfaction with treatment so far; and feelings and expectations about Buvidal going forwards. All audio recordings were then transcribed verbatim by a professional transcription service.

Transcribed interview data were entered into the qualitative software programme MAXQDA version 18 (VERBI Software, 2017) where they were indexed to both deductive codes based on the topic guide and inductive codes emerging from the data. All indexed data relating to decision-making processes were then exported into Microsoft Word documents and analysed via a process of Iterative Categorization (Neale, 2016, 2021). To this end, J.N. first reviewed all the decision-making data line-by-line, reduced each data extract to one or more bullet points linked to the participant’s study number, and then grouped and re-grouped these bullet points under simple descriptive headings (for example, ‘From whom did the participant first hear about depot buprenorphine?’; ‘What did the participant first hear about depot buprenorphine?’; ‘What were the participant’s first thoughts about depot buprenorphine?’; ‘What information did the participant receive about Buvidal?’; and ‘Why did the participant want Buvidal?’ etc.). In a second, more interpretative stage, J.N. then reviewed all the descriptive findings to identify the role of information and other key factors in participants’ decisions to begin the treatment. To increase coding and analytical rigour, J.N. and S.P. discussed each stage in their weekly team meetings. Additionally, S.P. reviewed the emergent findings and checked these against the interview transcriptions to clarify any uncertainties.

Findings

Participants

Information about the 26 study participants (18 male and 8 female; age range 30–62 years) is shown in Table 1. Most (n = 21) identified as White (British, Welsh or English); approximately one-third (n = 9) said they were in a relationship; most (n = 19) were either not in work or receiving welfare benefits; almost all (n = 24) reported a problem with heroin use (2 described a problem with other opioids); and just over a half (n = 14) had ever injected.

Table 1. Participant characteristics (self-reported).

Characteristic	N = 26
Sex
Male	18
Female	8
Age (years)
Mean (range)	42 (30–62)
Ethnicity
White British	14
White Welsh	3
White English	1
White British-Welsh	1
White English-Welsh	1
White European	1
White Other	1
African Caribbean	1
Asian-Indian Black	1
British Caribbean	1
Mixed Heritage	1
Relationship status
In a relationship	9
Separated	8
Single	7
Divorced	1
Widowed	1
Current employment status
Not working/ benefits	19
Working full-time	2
Working part-time	2
Student	3
Type of opioid problem
Heroin	24
Other opioids	2
Ever injected heroin
Yes	14
No	12

Analyses indicated that participants’ decisions to initiate treatment were underpinned by four core interconnecting factors. These were: 1. receiving sufficient information to trust depot buprenorphine; 2. current treatment not meeting personal needs or goals; 3. frequently uncritical perceptions of depot buprenorphine; and 4. restricted access to depot buprenorphine making participants feel grateful to have been selected. Each of these is presented below using anonymised quotations to illustrate salient points. Given the relatively small number of people receiving depot buprenorphine at the time participants were recruited to the study, only limited demographic information about each participant is reported to avoid deductive disclosure.

Receiving sufficient information to trust depot buprenorphine

Whilst a few participants had known about depot buprenorphine for more than a year, most had first heard about it in the last twelve months. Of these, some had only learned of it in the previous four weeks, and several had not been aware of it until a few days before having their first injection. When describing how they had first heard about the treatment, participants mostly explained that this had been via ‘discussions’, ‘conversations’, or ‘consultations’ with addiction treatment professionals. Often, however, participants referred to informal conversations with other people attending treatment services, people with whom they had been in prison, or, in one case, a friend who had had a private prescription for depot medication. In addition, a few reported that they had first learned of depot buprenorphine from the media or from family members. For example, Participant 05 explained:

I’d heard about it [depot buprenorphine] from people, you know, just having a fag [cigarette] outside the drug and alcohol place [treatment service]. Told me they were on an injection. (Participant 05, male)

Some participants recalled how their doctors, nurses or key workers had taken the time to explain one or more aspects of the medication to them during those early conversations. Topics discussed included the different doses, medication durations, injecting sites, dose stability, requirement to be in mild withdrawal to initiate treatment, futility of using heroin after receiving depot buprenorphine, potential advantages and disadvantages of the treatment, or the need to carry a card to indicate that they were receiving the medication in case they were ever taken to hospital and required pain relief. One participant also reported that he had been shown a syringe with the buprenorphine:

I got it [information] verbally, then I got some leaflets about it, then shortly after that… I was shown the syringe with the medication in it. (Participant 17, male)

In contrast, others said that they had been given little information by professionals at either their initial or subsequent consultations or they reported that they could not remember what they had been told. Reflecting this, some did not appear to know which dose or duration of medication they had personally received or to be aware of their treatment plan. This lack of information did not, however, tend to cause participants any concern. This is illustrated by Participant 18 whose focus was on withdrawal symptoms, rather than knowing her treatment dose:

I had the median dose yesterday, to last for a week. Is it 64 milligrams?… I’m supposed to go back next Monday, and they give me… I can’t remember what it was, but it was the monthly dose… I can’t… remember if she said that would change or not… As long as it holds me [prevents withdrawal symptoms]. (Participant 18, female)

Nearly all participants stated that their healthcare provider had given them leaflets or a ‘booklet’ about the treatment, but several said that they had not received any written information. Interest in, and engagement with, any written documents received was, meanwhile, mixed. Some reported that they had read everything carefully, others said that they had read aspects of the information with interest, and a few stated that they had glanced over the material or did not read it at all. Information gleaned from written sources was correspondingly variable. Some participants confirmed that the leaflets/booklet had given them a good understanding of different aspects of the medication whilst others acknowledged that they had not learned much or could not remember any details of what they had read:

I read the leaflet thoroughly, like. And yeah, thought, ‘Yeah, definitely give it a go, sounds good’. (Participant 02, male)

To be honest with you, I don’t really remember a lot, because I’m so scatty and everything. Because of the ADHD [attention deficit hyperactivity disorder], I don’t remember things. (Participant 25, female)

A few participants said that they had asked their healthcare provider questions, and several reported that they had asked other patients questions. Only a small number had looked online for information, of whom two said that family members had researched the medication on a computer for them. Despite this, some participants said that they had unanswered treatment questions relating, for example, to side effects, dosages, how the medication was released into the body, what would happen if they used street drugs as well as their depot buprenorphine, or whether they could receive additional medication if their current dosage was insufficient. A few participants also appeared to misunderstand aspects of the treatment; for example, believing that it contained an opioid antagonist, was administered over different time frames, or was intended for detoxification. This was the case for Participant 21 who, until his key worker gave him more information a few days before he had his injection, had mistakenly assumed that he would be given an initial dose for six months followed by a tapered reduction plan:

I’ll be honest, I was under the impression that it was once every six months, that’s what I thought. I don’t know where I’d heard that, but…I thought ‘Oh, you get this injection, and it lasts for six months… or three months’. Yeah, you know, longer than it has been anyway. And then… you kind of do it as a reduction thing. So you get, I don’t know, 30 mils on your first one, 20 on your second one, 10 on your third one. And then you come off. (Participant 21, male)

Overall, however, participants confirmed that they were satisfied with the information they had received and felt that they had understood enough to make their decision to begin the treatment. Indeed, several justified their lack of detailed understanding of the medication by emphasizing that they trusted their doctor, key worker, or nurse to make appropriate decisions for them or they believed that an unsafe medication would never be prescribed in the UK:

I just thought, ‘In this country, they wouldn’t give you something that is harmful, so try it’. (Participant 20, male)

Current treatment not meeting personal needs or goals

In addition to information, a further important factor that affected participants’ decisions to initiate depot buprenorphine was dissatisfaction with aspects of their current treatment or concluding that their current treatment was not effective or was not meeting their needs. This then made a depot medication seem attractive in comparison. In this regard, some participants explained that they did not like the way methadone made them feel or did not think that Espranor (an ORT medication comprising a freeze-dried buprenorphine wafer) was effective or lasted long enough for them to function properly. One participant stated that he had already experienced multiple attempts to complete residential rehabilitation without success. Meanwhile, others added that their doctor or key worker similarly believed that their current treatment was not helping them.

Other negative features of current treatment included the time, cost, and energy of having to attend pharmacies and services, but also constantly ‘bumping into people’ whom they complained tried to sell them drugs whilst they were attending appointments or collecting their medication. As Participant 01 explained:

I don’t want to hang around over there [drug treatment service], because you’re meeting people, you know, offering you whatever. So, yeah, I want to avoid the [drug treatment service] as much as I can. (Participant 01, male)

Regular, and sometimes daily, service attendance was identified as being particularly arduous by those who were working, were studying, had children, or lived in rural areas where it might take two or more hours (often incurring significant costs) to travel to an agency. This resulted in some participants missing appointments and consequently having their current medication withdrawn; again, making depot buprenorphine seem a better treatment option:

I had to go to a doctor’s appointment because I missed a couple [of medication collections]. And the doctor then advised me… if I go on to this [depot buprenorphine], then I haven’t got to worry about missing these appointments, and I haven’t got to worry about a lot of other things, so it seemed like a better idea. (Participant 08, male)

Alongside the benefits of only weekly or monthly service attendance, the pharmacological properties of a long-acting depot form of buprenorphine were generally more appealing to participants than those of their current medication and so likewise encouraged treatment initiation. For example, participants reported that having a depot injection would prevent withdrawal symptoms, make using heroin ‘pointless’, or help them to feel ‘normal’ throughout the day. Thus, Participant 23, who had recently returned to college, enthused about how the treatment would not only mean that she did not have to go to the pharmacy every day but would also keep her feeling stable:

I just thought it was brilliant, because it was a sense of freedom, not having to go to the chemist every day, especially doing my studies as well… Just the fact of it being stable in your system, you know, the opiate levels being stable, rather than going up and down. (Participant 23, female)

One participant had also decided to have the treatment after his doctor had reassured him that he could return to the service for additional or alternative support if depot buprenorphine did not suit him, whilst another stated that he had been prescribed Espranor and Subutex on many previous occasions and so felt confident trying another buprenorphine formulation:

Basically, with this, this Buvidal, I know it’s exactly the same as Espranor and Subutex, and I’ve been on that all my life basically. Loads of times. (Participant 13, male)

In addition, many participants welcomed the opportunity of being treated with depot buprenorphine because they believed that, in contrast to their current medication, it would enable them to stop using heroin and other opioids. In this regard, many emphasized how they were ‘tired of’ or ‘too old for’ using substances or could not afford to keep buying drugs. In particular, they expressed weariness about waking up in withdrawal and having to think about and take heroin or methadone each morning:

I’m just sick of it, you know, being sick [experiencing withdrawal symptoms] all the time. You know, daily grind of going out and earning money. It [depot buprenorphine] just sounded like it would free up my life. (Participant 05, male)

Looking to the future, many also believed that depot buprenorphine would enable them to ‘change their lives’, ‘put their life back together’, or achieve their personal goals in ways that previous medications had not facilitated. For example, after starting depot buprenorphine, participants often anticipated that they would have more energy, freedom, and time to spend their days as they wanted and a few added that they would no longer need to acquire money illegally or worry about getting arrested. Relatedly, some hoped that this would enable them to address their homelessness and achieve greater housing stability as well as rebuild relationships with their children/grandchildren and other family members:

I’ve been wanting to stop this [heroin use] for a long time now. I’m not getting any younger. I want to see my kids. It [depot buprenorphine] is hopefully gonna be the best thing that’s ever happened to me. (Participant 11, male)

Frequently uncritical perceptions of depot buprenorphine

In opting to have depot buprenorphine, participants also commonly said that they had been influenced by other people’s views of the treatment, including repeated references to it being a ‘game-changing’ medication for the addictions field. Several participants reported that doctors and key workers, and in one case a hostel worker, had encouraged them to have the treatment, emphasizing that it is ‘fantastic’ and can help people to ‘turn their lives around’:

I was told it was being rolled out in Wales, rolling out in the prisons in Wales, and that it was working fantastic there, and people were saying it was lifechanging. You know, they [treatment professionals] were really encouraging… making it sound like, you know, a wonder drug type thing. But, yeah, I was just keen to try it. (Participant 23, female)

Likewise, some participants discussed how other people already in receipt of the medication had told them that having the depot injection had been ‘a relief’ or ‘the best thing they had ever done’ and had advised them to try it. For example, Participant 16 had become interested in depot buprenorphine and researched it online after a friend had benefitted from receiving it:

Well, my friend had it, and it worked wonders for him, yeah. And he advised it. (Participant 16, male)

Reflecting these positive assessments, participants often emphasised that depot buprenorphine was ‘amazing’ or ‘too good to be true’; particularly because it would prevent them from experiencing withdrawal symptoms for a month. Indeed, many stated that they had wanted to receive depot buprenorphine from the moment they had heard about it. Accordingly, some said that they had repeatedly asked their doctors or key workers if they could have it and others reported that, once offered it, they had ‘jumped at the opportunity’, ‘didn’t have to think about it’, or ‘accepted it on the same day’. Thus, Participant 07 reflected on how she had been so pleased to have been offered depot buprenorphine that she had even declined her doctor’s invitation to first go home and read the leaflets:

I just said, ‘No, I’ll have that [depot buprenorphine], definitely’. And she [doctor] was saying, ‘Do you want to go home and read [the leaflet]?’ I said, ‘No’. I said, ‘I’ll have it today’. (Participant 07, female)

Sometimes, however, participants said that they had heard mixed reports about the treatment from other patients. These reports generally referred to warnings that the medication caused unpleasant withdrawal symptoms. Faced with these more negative descriptions, participants tended to discount them, explaining that people experiencing withdrawal symptoms had probably not followed the requirement to be in withdrawal prior to starting the treatment, or people’s bodies react differently to drugs and so there was no point in being deterred by someone else’s negative experience. A few people had also heard that the injection hurt, but this was considered a small disadvantage in return for the benefits of having the treatment. As Participant 06 argued:

And I’ve had a few people say they were really ill… stuff like that. But I didn’t take no notice of what other people say. My body’s my body. People are different, people’s bodies are different. (Participant 06, male)

Overall, participants expressed relatively few concerns about depot buprenorphine. Some said that they had been worried about whether the medication would last as promised, whether the dose they were to be given would be enough, or whether, as Participant 08 wondered, they might ‘miss the habit of using’. In addition, one male participant explained that he had been wary as the treatment was so new and he felt like ‘a guinea pig’, another said he had initially been uncertain about the treatment as he felt he still wanted to use heroin, and one female stated that she was nervous about having to ‘face up to reality’. Despite these early reservations, participants had soon concluded that the treatment offered them positive opportunities and so had proceeded voluntarily. One male, however, felt that he had been pressurized to have depot buprenorphine by his key worker. He stated that he had eventually agreed because he was withdrawing, had been refused a methadone prescription, and did not want to ‘commit crime’:

I was calling [healthcare provider] every day, like, ‘When can I come in to get back on [my methadone] script?’ Every time I’d speak to her [key worker], she would like try and push this Buvidal on me… I still wanted to use [heroin] so… I declined every time…. Every day, I’m waking up like sick [withdrawing]… I’ve had to go out and try and raise funds to get heroin, so… I was shoplifting again… I knew if I got arrested again, they’d take my place [housing]… I didn’t want to commit crime, so I reluctantly gave in… [I said,] ‘I just don’t want to be sick no more, so if that’s what it takes, I’ll come in for the Buvidal’. (Participant 14, male)

Restricted access to depot buprenorphine making participants feel grateful to have been selected

Lastly, when describing their decision to initiate depot buprenorphine, participants frequently emphasised how opportunities to receive the treatment were limited and this made them feel grateful for having been chosen and consequently willing to comply with any preconditions so that their treatment could begin. For example, many said they had had to join a waiting list and some reported that they had been told that there was no guarantee they would be ‘accepted’ for the treatment, so they first had to be ‘approved’. The exact process for being approved was not clear from the interviews and seemed to vary by treatment service. However, participants routinely referred to having to provide drug free urine samples, demonstrate that they were stable on their existing ORT medication, reduce their methadone prescription to the recommended level of 30 mg for switching to buprenorphine, and/or pass a liver function test. Participant 21 described his approval process below:

I was the one who [asked], ‘Can I get this Buvidal thing?’… He [key worker] went, ‘I’ll see’. And then… about a week ago, he called me back and said, ‘Yeah, as long as you give a clean sample, you can have it’. (Participant 21, male)

A small number of participants also stated that their treatment service had only been trialling depot buprenorphine when they had first requested it, so they had had to wait for it to be made more generally available. Meanwhile, several participants explained that funding for depot buprenorphine had run out at their service for a period, so their access to the treatment had been delayed. As a result, some participants had had to wait for weeks or months and, in one case, a year:

There was a waiting thing for it because I think they were doing like a trial, and they only had enough for a certain few. But anyway, I’ve got on it now, and that’s the main thing. (Participant 13, male)

I tried to get on it before, but they said they’d run out of funding. My name was down on the list. (Participant 03, male)

One female participant who had waited three months for her first treatment injection said that she had not minded this wait as it had enabled her to plan mentally. Not dissimilarly, but contrary to the more common desire to initiate depot buprenorphine as soon as possible, two other participants who had been offered the treatment quickly had asked for their initial dose to be deferred so that they had longer to prepare. Specifically, one had arranged to start the medication after the Christmas holiday period when he knew he would be less stressed and therefore better able to ‘commit’, and another had requested a delay so that she could have one final week of using heroin. The latter explained:

It was kind of sprung on me. I said I wanted to start the Buvidal, and then she said like, ‘Do you want to do it here and now?’ And I hadn’t like prepared myself for having it. I didn’t realise I could have it there and then. And then I said, ‘OK, can we start it next week?’ (Participant 26, female)

Given depot buprenorphine’s limited availability, participants often felt that their doctors, nurses, or key workers had specifically selected or chosen them for the treatment; thus, reinforcing their sense that the treatment was appropriate for them. Some participants attributed this prioritization to the fact that their doctor knew that they had not been using heroin in addition to their ORT medication or recognized that they were ‘serious about their recovery’ and ‘wanted to change’. Others felt that their doctor appreciated that daily collections of ORT medicines from the pharmacy were difficult for them given their other responsibilities and commitments or understood that they needed a different type of intervention because of the severity of their current problems. This included one female participant who stated that she had been expedited for depot buprenorphine because she had an abusive partner and had recently reported suicidal ideation.

Several participants also said that their doctors had told them that depot buprenorphine was an expensive medication or not appropriate for everyone. Additionally, a few (such as participants 06 and 22) had been advised that the treatment was ‘a once in a lifetime opportunity’ or ‘their last chance’. Reflecting this, some had been informed that they would be given the treatment for three months in the first instance and they would have to demonstrate good adherence if they wanted to receive it beyond that time. In response, several participants, including Participant 22, stated that they understood the seriousness of the commitment and knew that they had to be certain that they wanted to change:

She [doctor] chose me out of eleven people, I think… It was narrowed down to I think she said thirty, and then narrowed down to eleven that she could choose to have it… She called me up and she said, ‘I think I’ve got the solution for you.’ … Then obviously she told me about the Buvidal… And she was like, ‘You’ve got to be sure that you want to change, because once it’s in there…’. I can’t take drugs again…. So, basically, saying to me, ‘If you don’t want to really change, I can give this to somebody else.'… which is fair enough because it is a once in a lifetime opportunity. Like I said, if I’ve been selected, I’d be a fool not to take it. (Participant 22, female)

Discussion

Consistent with previous research, we found that people who had been offered injectable depot buprenorphine engaged with information from a variety of sources (professionals, other people in treatment, family members, and the media) and in a range of formats (verbal, print and online) (Johnson et al., 2022; Matheson et al., 2022; Neale et al., 2019b). However, their interest in and ability to absorb and retain knowledge, particularly from written materials, was variable (Neale et al., 2019b). Furthermore, and contrary to the concept of the ‘informed patient’, relatively few participants asked questions about, or independently researched, the medication. Indeed, some had unanswered treatment questions and others misunderstood aspects of depot buprenorphine. These findings add weight to the argument that providers should proactively offer information to potential patients rather than assume that people will seek this out themselves (Lintzeris et al., 2019; Neale et al., 2019b).

Although some participants reported that drug treatment professionals had made time to understand their treatment needs, explain depot buprenorphine to them, and answer their questions, others said that they had no or limited recollection of any information given to them. Moreover, one participant reported that he had felt pressurised into accepting depot buprenorphine when he had wanted methadone (see also Johnson et al., 2022, for accounts of some patients in Sweden feeling coerced into receiving depot buprenorphine). Whether participants had always received information but sometimes forgot and whether the participant reporting pressure had not been under as much duress as he had perceived cannot be determined from our data. Nevertheless, participants’ understanding of both the medication and their own personal care plan or treatment pathway was often limited. In this regard, patient comprehension could potentially have been improved by inviting them to bring another person along to their appointments, offering to read out key information, or allowing more time for discussion during consultations (Graham & Brookey, 2008).

Despite gaps in their understanding, participants generally expressed satisfaction with the information they had been given via treatment services. Furthermore, there was evidence that they trusted healthcare providers to make decisions for them and felt confident that the UK regulatory system would protect them from harmful medical products (see also Henwood et al., 2003 and Johnson et al., 2022). Injectable depot buprenorphine was a new treatment across England and Wales and some participants had never heard of it until very shortly before they started the treatment. Trust in professionals and wider medical structures appeared to play a role in encouraging participants to initiate this new form of ORT even though their knowledge and understanding of the medication were incomplete. This seems to warrant further monitoring given that recent qualitative research conducted in Norway found that some people who retrospectively felt that they had been rushed and unprepared when starting extended-release naltrexone for opioid use disorder subsequently complained that they had been misinformed by professionals and became unhappy with their treatment (Brenna et al., 2022).

Patients’ dissatisfaction with their current ORT (particularly in respect of the time, cost and inconvenience of daily medicine collections and the wish to avoid people who may be selling drugs in or near treatment services) as well as their aspirations to live more fulfilling lives (such as wanting to be drug free, rebuild relationships, maintain employment, or have stable accommodation) have been well-documented in other research (Barnett et al., 2021; Harris & McElrath, 2012; Laudet, 2007; Matheson et al., 2022; Neale et al., 2016; Tompkins et al., 2019). Nonetheless, the potential impact on treatment decision-making of strong disaffection with current medication combined with a compelling desire for a better future has been less well considered. Where people are eager for change but see few options open to them, they may be more inclined to place their trust in a new medication and ‘jump at the opportunity’ to receive it without necessarily giving it detailed consideration. This seems especially likely to occur if that new medicine is presented to potential patients as an opportunity to leave behind a life of stigma and marginalization or as a ‘last chance’ to realize their treatment goals (Brenna et al., 2022; Ecks, 2005; Rance et al., 2021; Treloar et al., 2022).

Given that depot buprenorphine has the potential to address various limitations of oral forms of ORT, it is unsurprising that interest amongst our participants was high (Brenna et al., 2022; Tompkins et al., 2019). This appeal is inevitably increased if both professionals and other patients recommend it uncritically (Brenna et al., 2022; Johnson et al., 2022; Lagios, 2021). That our participants routinely accepted positive accounts of depot buprenorphine whilst rejecting or downplaying any negative assessments of the medication articulated by their peers again suggests that decisions to initiate the treatment were often influenced more by patients’ desire and need for life changes than by a carefully considered decision-making process that factored in the limitations of any pharmaceutical drug. In due course, this may lead to disappointment and treatment discontinuation if depot buprenorphine does not deliver as promised (Brenna et al., 2022; Madden et al., 2018; Tompkins et al., 2019). On the other hand, if depot buprenorphine repeatedly enables people to achieve positive outcomes and these are appropriately evidenced and documented, its reputation as medication deserving of further investment will be justified.

At the time of our interviews, the availability of depot buprenorphine was limited in many areas of the UK. Consequently, our participants often believed that they had to prove themselves to be ‘selected’ or ‘chosen’ for treatment. This situation provides a tool or lever that professionals may consciously or sub-consciously use to motivate patient engagement, but the consequences of encouraging people to feel grateful or privileged for being offered depot buprenorphine are unknown. Whilst some of our participants responded by acknowledging the importance of committing to the treatment and not needlessly taking a place that might be used by another person, we do not know what, if any, impact not being selected or being selected and not achieving positive treatment outcomes might have on patient morale and subsequent substance use. Over time, the novelty of depot buprenorphine will likely decrease and some of the premium associated with having a state-of-the-art treatment will correspondingly fade. Nonetheless, limited access will almost certainly remain since the availability of any form of ORT tends to be restricted by other factors such as stigma, cost, regulatory processes, and commissioning practices (Barnett et al., 2021; Barnett & Hui, 2000; McElrath, 2018; Treloar et al., 2022). For as long as depot buprenorphine has added value because it is in short supply, the risk that people request it without taking time to make a carefully informed choice remains (see also Brenna et al., 2022).

Although our analyses suggest that patients’ decision-making in respect of depot buprenorphine was often not optimal, it is equally important to emphasize that some participants had asked questions about the medication, some had read the written material provided, and some had discussed the treatment with professionals, peers and/or family. Some had also recognized that there were uncertainties and potential problems in accepting depot buprenorphine but had carefully reflected on these prior to deciding that they would go ahead. One benefit of having to wait to start treatment is that it may give people extra time to consider their decision to accept. Indeed, several participants explained how they had successfully negotiated delayed start dates so that they could prepare themselves mentally and be ready to give their full commitment. Given these findings, we cannot conclude that participants had routinely made rushed or ill-informed choices. Instead, our analyses remind us that patients can and often do consider treatment options carefully but the decision to start depot buprenorphine is complex and often constrained by broader personal, social, and structural factors beyond an individual’s control (Peterson, 2009).

Limitations

The data presented derive from a relatively small sample of people who had just received their first depot buprenorphine injection. As such, the findings cannot be transferred directly to people who did not agree to receive treatment or who agreed but then changed their mind prior to their first injection. In addition, our participants were all over 30 years of age, most were white British, most were not currently working, nearly all self-reported that heroin use had been a problem for them, and all received the same injectable depot buprenorphine product. Caution should therefore be taken in generalizing from our sample to people reporting different demographic and drug use characteristics or receiving other pharmacological agents. Furthermore, recruitment was from community services across England and Wales at a time when depot buprenorphine was relatively new. Findings may be different in other countries and contexts where ORT provision is different and depot buprenorphine is more, or less, established. These caveats aside, our findings show consistencies with, and supplement data from, other emerging qualitative research on patients’ views and experiences of receiving depot buprenorphine. Also, the factors we have identified as underpinning patients’ decisions to initiate treatment and the way these factors interact with, and often undermine, the concept of the ‘informed patient’ warrant consideration whatever the population, setting or depot buprenorphine product.

Conclusions

People experiencing opioid use disorder have varying views and experiences of depot buprenorphine (Barnett et al., 2021; Johnson et al., 2022; Matheson et al., 2022; Saunders et al., 2020; Tompkins et al., 2019 ). Accordingly, efforts must be made to ensure that it is received by those most likely to benefit. To facilitate this, patients require accessible and relatable information in a range of formats plus opportunities to ask questions and to seek advice from both professionals and peers with personal experience of the medication (Brenna et al., 2022; Henwood et al., 2003; Lintzeris et al., 2019; Neale et al., 2019b). Our findings have, however, shown how patients’ decisions to initiate depot buprenorphine are not only influenced by their access to information. Decision-making is also shaped by wider issues such as a new medication’s reputation and availability and how this interacts with a patient’s satisfaction with their current treatment and their wider goals and aspirations (Neale et al., 2018). Dissatisfaction with current ORT, patients’ desire for a life-changing treatment, and the limited availability of depot buprenorphine may all increase its appeal, but not necessarily in ways that empower patients to make informed choices. The complex life problems often associated with opioid use disorder cannot be solved by pharmaceutical products alone and other resources and interventions are also necessary. We should therefore avoid overclaiming what any individual medication can achieve, but equally advocate for increased access to all forms of ORT so that patients do not feel they have to rush into any medication without adequate preparation.

Acknowledgements

The authors thank all study participants for sharing their views, staff at the six services for enabling access to their patients, Mr Paul Lennon for providing expert feedback to help shape the study design, and Mr James Gunn for transcription. The authors also acknowledge two anonymous reviewers for their helpful comments on an earlier version of the manuscript. Joanne Neale and Stephen Parkin are part-funded by, and John Strang is supported by, the National Institute for Health and Care Research (NIHR) Biomedical Research Centre for Mental Health at South London and Maudsley NHS Foundation Trust and King’s College London, UK. The views expressed are those of the authors and not necessarily those of Camurus, the NHS, the NIHR, or the Department of Health.

Disclosure statement

In the last three years, J.N. has received, through her university, research funding from Mundipharma Research Ltd and Camurus AB and honoraria from Indivior and Camurus AB for unrelated webinar presentations. S.P. is part-funded by income from research grants obtained from MundiPharma Research Ltd and Camurus AB. In the last three years, J.S. has received, through his university, research funding from Mundipharma Research Ltd, Camurus AB, Accord Healthcare and Pneumowave.

Data availability statement

The data set is not publicly available. Contact the first author for further information.

Additional information

Funding

The study was funded by Camurus AB, the company which developed Buvidal.