Support for people who use Anabolic Androgenic Steroids: A Systematic Scoping Review into what they want and what they access

The wide variation of terms to describe AAS means that searching the literature is fraught with difficulty and could lead to key studies being left out, as the term ‘IPED’ is often used when covering a wider variety of substances than just steroids such as Human Growth Hormone [30]. Variations on the acronyms included: PIED, PES, PED, APED, NMASS (non-medical Anabolic Androgenic Steroid), and terms such as ‘doping’, ‘testosterone boosters’, ‘prohormones’, ‘ergogenic aids’ ‘designer steroids’ and brand names. The first author tested key words and word groupings, drawn from recent UK Public Health literature.

In June 2018 a search was carried out in EBSCO (Table 1), searching 141 databases. Papers were found in 52 databases (see Additional file 1). Some databases proved irrelevant, but it was useful to take a multi-disciplinary approach as it was difficult to predict where the most pertinent studies might come up. Separate searches on SCOPUS, Google Scholar and reference lists of included articles were also undertaken, as electronic databases may not throw up all available literature [31].

Inclusion and exclusion criteria (Table 2) were applied initially through a title, abstract and full paper screening. Publications were limited to those in English (due to lack of resources for translation), without geographical restrictions. Irrespective of the study design, articles that met inclusion criteria were reviewed, i.e. populations such as recreational users and non-competitive AAS-using bodybuilders were eligible; there were no age or gender restrictions. The first author screened and reviewed all articles. To validate the search strategy the second author reviewed 10% of articles screened out by title and 20% screened out by abstract. The second, third and fourth authors checked 10% each of articles in the full review.

Our search found several papers relating to question 1, but few relating to question 2, therefore the search strategy was revised for question 2. Scoping reviews do not necessarily have to rate the quality of the papers [27], however the authors concluded that due to the complexity of identifying participants, such a quality review was of value. Therefore, for question 1, only peer-reviewed documents were included to ensure a level of quality, and this proved fruitful when considering support accessed. However, for question 2, only nine papers gave limited information on support wanted, therefore the authors searched the references of the included articles for grey literature (non-peer reviewed) that might include qualitative data on ‘ideal support’. One report that specifically sought information relating to ideal support wanted was identified [33]. Acknowledging this report was not peer reviewed, the authors felt the information contained was of value and relevant to the second question. Figure 1 outlines the search strategy.

Information regarding support and advice, population, substance use, study aims, recruitment methods, methodology and demographics was extracted by the first author and 30% of data extraction forms were crossed checked by co-authors. Reviewer agreement on inclusion and exclusion criteria was 100%. Both qualitative and quantitative data were included. Due to the different types of articles, three quality assessment tools were used: The CASP Checklist [35] for qualitative articles (Table 3).

For the quantitative studies the Quantitative Review Methodology tool by Davids and Roman [46] was adapted. To assess the quality of the grey literature, the quantitative and qualitative elements were individually assessed using the aforementioned assessment tools, then the Mixed Methods Appraisal Tool [47] was used, to assign an overall quality score. Studies scoring ** or above (*** 67–100% & **34–66% score) were included (Table 4) and no studies were excluded on the basis of quality.

There have been several challenges when identifying and reviewing the literature. The number of different terms that cover AAS is inconsistent (Table 1). Identifying purely recreational users was difficult due to a lack of granularity when studies consider AAS/IPED use e.g. terms such as bodybuilder, weightlifter and athlete were utilised both for competitive and recreational use. Not all studies identified whether participants used solely AAS or in combination with other IPED. Due to the heterogeneous nature of the data this review takes a narrative approach. Moreover, unless clearly stated as AAS use within the study, the generic term IPED will be used.

Analysis was mixed method as scoping reviews can incorporate numerical summaries alongside thematic analysis of qualitative data [56]. Initially tabulations were used for the quantitative data, which led to the identification of specific categories such as BBV checks and acquisition of injecting equipment. Thematic analysis was conducted in an inductive way, each article was read to identify types of information and support and then categorised into type 1 (information or support accessed) or type 2 (information or support wanted). The research team met frequently to discuss the emerging themes, which led to the identification of three overarching themes: harm minimisation, research and information and support for health concerns. Then sub categories were identified based on the type of information or support. It was challenging to identify the type of information participants were searching for and in these instances the authors coded this data as ‘seeking of general information on IPED use’.

IPED users sought different types of information and support from a range of potentially overlapping sources: NSPs, pharmacies, doctors, sexual health clinics, other medical professionals, peers, coaches/trainers, friends, dealers, family, the internet, specialist online fora, experienced users, steroid guides in gyms, underground books, online videos and addiction clinics (Table 5).

Ten studies evidenced IPED users obtaining injecting equipment from NSPs. However, five studies recruited from harm reduction services [19, 43, 51, 53, 54] and one had predominantly NSP clients [3, 22, 42]. This could explain the prevalence of NSPs as places to access injecting equipment. Hanley Santos and Coomber [43] noted that some reported no difficulties using NSPs, found services easy to access, anonymous, discreet and they valued the advice. However, they also reported users collecting supplies on behalf of friends who were afraid of being recognised. Elsewhere 44% of IPED users obtained needles on behalf of others and 27% acquired needles from friends [54]. In one study of 1716 internet forum posts, it was evident, although not explicitly stated, that NSPs and anti-aging clinics were being used since experienced IPED users advised inexperienced users to access such services [44].

Table 5 shows that some IPED users did access HiV tests and/or vaccinations for BBVs; although take up was not high. Those who had discussed their AAS use with a doctor were more likely to have undertaken a test for Hep B or C, or HiV [8] and one study found that people screened for Hep B or C and HiV were more likely than those who did not to rate their overall experience with the doctor as good [56]. AAS users also sought advice on safer injecting.

As Table 6 highlights IPED users’ general information about IPED use was sought from a range of sources particularly internet sites and subject specific fora. Only four studies evidenced AAS users seeking information from medical professionals [36, 49, 52, 57]. Rowe et al. [8] found that NSP staff were perceived as the most reliable source of information relating to IPED followed by nurses and doctors, however others found doctors’ knowledge limited [36, 38, 58]. For more specific information around cycling and stacking (i.e. what combination of substances are used over what length of time), dealers, fellow users and online fora were utilised. Maycock and Howat [36] found that experienced users and dealers were seen as a credible source of information. This is not without risk as substances may affect individuals differently, dependent on physiological make-up and patterns of use. One study found that over 60% of AAS users reported getting incorrect information about adverse side-effects from credible sources [36] and some AAS users acknowledged that not all information from dealers was reliable [43]. Additionally, one study highlighted self-experimentation as a key method for working out the most efficacious doses [3].

Some studies referenced IPED users ensuring that they got their ‘bloods’ checked, and other tests done regularly by a medical professional (Table 7) however, not all had told their doctor about their IPED use [8, 19, 52, 58]. In some countries, IPED users were able to access prescription medicines [42, 59]. IPED users sought help from Accident and Emergency departments and NSPs and self-medicated for AAS-related health issues [19] but it is unclear which, if any information sources they accessed on how to self-treat. Help was sought from experienced users [38] often through online fora [41]. All six AAS users in Skårberg et al.’s study [38] were using an addiction clinic to help manage their AAS use/dependency specifically to support psychological problems. Differences were found in the type of support or information sought dependent on the type of participant and type of support offered. Women were more likely to access health services than men, and older men were more likely to access these than younger men [55].

Figure 2 lists the kind of support that IPED users wanted.

One study found that people who were thinking about using AAS sought out detailed information to make informed choices [36]. Requests were posted on internet fora for information on side-effects and the most effective ways to achieve results [44]. According to Dennington et al. [33] users wanted to know the optimum way to use IPED, where to acquire high quality substances, effective nutrition and exercise regimes, safer injecting techniques, safe ways to combine substances for effectiveness and when to consult a doctor. Grogan et al. [37] reported that women found much of the online information and ‘steroid bibles’ male-centric and wanted more information on side-effects for females.

In one study 66% of participants were willing to seek medical supervision for their AAS use [58], and 91.6% of users wished to use AAS legally under direct supervision of a knowledgeable doctor [5]. Some AAS users were frustrated by the limited health options available and were willing to buy drugs from their doctor [41]. Users expressed a desire for treatment for IPED-related physical problems, e.g. abscesses and the need for specific services such as blood screening [33, 39]. Griffiths et al. [42] found that AAS users wanted post-cycle therapy (PCT) to stay healthy, minimise harms and to prevent losing the gains acquired from use. Furthermore, a few users suggested that IPED should be legal and medically prescribed [33]. Some users wanted specialist IPED services where drugs could be tested for purity and to know how to avoid counterfeit drugs [33, 36]. The ideal support sought was focussed on managing health risks [5, 41]. Moreover, participants were also specific about how that support should be delivered, wanting: 1. a place to obtain credible advice and information that was non-judgemental and balanced and 2. medical support by knowledgeable professionals.

Many users sought AAS information from the internet, but the majority of online material presents a pro-use position [72], can be incorrect or even dangerous [73] and sites may sell steroids [74], which could put users at risk and could perpetuate the impetus to use. Andreasson and Johansson [75] suggest that the online community with its openness and acceptance of AAS use is part of a culture of learning and education for novices. They believe such communities can be seen to normalise AAS use, the idea of obtaining an ‘ideal masculine body’ without using AAS becoming a fantasy.

Most support from professionals has a harm minimisation focus. AAS users are already less likely than traditional injecting substance users to engage in risky injection practices [76] which could explain the low uptake for BBV tests. However, AAS use does increase sex drive [77] so this could increase sexual risk taking and may explain why HIV tests uptake was higher than BBVs. Users also sought help from sexual health clinics [53]. If, however, IPED users do not perceive this as a risk, they may not be engaging with services, and might be accessing NSPs simply because the needles are free. Three studies evidenced that guidance on injecting came from AAS dealers [8, 40, 43]. This is concerning as dealers often trivialised potential risks [37]. A good harm minimisation strategy could be for gyms to provide a safer injecting service [78] and this outreach service has been provided in some UK gyms [39]. However, gyms are often reluctant to provide anything that would suggest that their clientele may be using AAS [79]. For people who wish to access PCT there are few services available. Hence the need to reconsider PCT support due to the perceived needs linked to mental and physical health [42].

Only two studies [38, 55] showed that AAS users seek support for potential mood changes or underlying psychological issues. Kanayama et al. [69] concluded on the basis of seven studies that 30% of illicit AAS users develop dependence based on the Diagnostic and Statistical Manual of Mental Disorders (DSM) IV criteria and therefore it is a valid diagnostic entity. The DSM 5 [80] states that some individuals with muscle dysmorphia (MD), a form of body image disturbance, use AAS. Moreover, one study found that men using AAS for image-related reasons reported higher levels of MD and eating disorder symptomology [79, 81] suggesting there is a need for more awareness raising and that people showing such symptoms should be supported through appropriate gender specific interventions [82]. No study evidenced a need for support aligned to stopping AAS use. Traditionally, UK substance misuse support services offer talking treatments, and group and one-to-one sessions for people dependent on substances, yet there was no evidence in the UK studies of AAS users accessing these services.

Previous studies have advocated that specialist steroid services, created with input from AAS users are needed [39]. There are comparatively few specialised support services for people who use AAS and those few dedicated Steroid Clinics, often publicly-funded harm reduction initiatives, are subject to the ‘whims’ of local funding and resourcing. It would be useful to investigate ways of engaging AAS users with health services [6]. A useful strategy could be through health professionals engaging with online fora as a mechanism for harm reduction providing the language used is that of the forum and not of health professionals [44]. This would need to include strategies to overcome the lack of trust AAS users have in professionals. This review echoes these recommendations and suggests that there is a case to consider AAS users as a different population to traditional substance users. The AAS users accessing NSPs are more likely to be those who are injecting AAS and not those who take AAS orally. People who only use oral AAS are therefore potentially an even harder to reach population who are nevertheless putting themselves at risk. Dennington et al.’s [33] report examining current users’ views on the information and support provision found opposing views on types of support offered depending on the individual perspective of the user. Recent studies have identified distinct types of AAS user, each with different motivations for use [59, 83]. Differing motivations could be one reason why AAS users have differing opinions on the support offered. Consequently, offering information and support through a range of services and mediums and targeted at the different types of AAS use could be beneficial.

This review did not explore why people may not access the information and support that is currently available to them. However, several studies highlighted reasons as to why AAS users chose not to access specific services. When it came to accessing NSPs, pharmacies, and doctors, AAS users spoke of a fear of stigma or embarrassment [33, 39, 41, 43, 55], and there were several other reasons given for not accessing professional services [33, 36, 37, 41, 42, 55, 58]:

Generally, AAS users do not see themselves as “typical” drug users [33, 43]. Consequently, a key barrier for accessing NSPs [33] was the presence of other types of substance users. Another consideration could be the link between AAS use and MD [84, 85] as research suggests that people with MD may be in denial of this as a problem [86] and may not link it to their use of AAS. A lack of recognition of an underlying psychological problem would mean AAS users would not naturally seek any type of psychological support.

Using AAS requires more preparation, research and planning than other illicit drug use, and users take a strategic approach looking to minimise harm and maximise results [58]. This could explain why AAS users justify their use as being different from other types of people who use illicit substances. Whilst many felt a stigma in attending NSPs, others felt these offered a discreet service [41]. This area of barriers to accessing services requires further investigation.

As the search was limited to English language papers, this could have excluded some studies. In studies where participants were recruited from NSPs, the authors have presumed that AAS users were accessing those services, predominantly to obtain injecting equipment. Another limitation is that data came from different countries, which influences information and support available and willingness to take part in surveys, e.g. AAS use in Australia and America is illegal, whereas in the UK, it is legal for personal use, but it is illegal to supply. A further challenge has been to identify the types of substances used within the literature and exactly what information and support is related to which substance. However, as it is likely that people who use AAS are also using these in combination with a number of other substances to either achieve their aims or mitigate side effects, it is plausible that the support and information they seek is similar. To our knowledge, this is the first scoping review on the types of support accessed, and support wanted.