1 Introduction

Globally the number of overweight or obese people is increasing, with adult obesity doubling since 1990, leading to an estimated five million deaths from weight-related health conditions such as cardiovascular diseases, diabetes and cancer [1], with growing concern regarding obesity-related conditions in lower and middle-income countries [2].

Glucagon-like peptide-1 receptor agonists (GLP-1 RAs), such as semaglutide and liraglutide, and the dual gastric inhibitory polypeptide (GIP) and GLP-1 RA, tirzepatide, are drugs authorised in the UK by NICE (National Institute for Health and Care Excellence) for the management of obesity and/or type 2 diabetes mellitus (T2DM) [3-5]. A recent systematic review which summarised and critically appraised evidence arising from existing network meta-analyses (NMAs) evaluating the effectiveness of GLP-1 RAs for weight loss in obese patients highlighted that of these three types of GLP-1 RAs, subcutaneous semaglutide 2.4 mg and tirzepatide 15 mg were associated with the largest effects for weight loss at timepoints of six, 12 and 12+ months when compared to placebo [6]. Whilst tirzepatide and semaglutide were the most effective of these drugs for weight loss, they were also generally associated with increased risk of safety issues [6]. The review also identified the need for longer-term trials to establish the efficacy and safety of GLP-1 RAs when taken for longer than 72 weeks [6].

Qualitative research provides the opportunity to gain insight into perceptions of the long-term efficacy, safety and acceptability of GLP-1 RAs, as well as the benefits and challenges associated with introducing this type of intervention for patients and health services [7]. One systematic review explored patient and staff views of barriers and facilitators to initiating, and adhering to, injectable treatments for type 2 diabetes [8]. Only two of the 42 included studies included participants with experience of GLP-1 RAs, but neither of these explored views of that specific treatment. Another systematic review searched for quantitative and qualitative evidence to explore ‘values, preferences and burden of treatment for the initiation of GLP-1 receptor agonists and SGLT-2 inhibitors in adults with Type 2 diabetes’ [9]. Whilst the results from this review were primarily based on GLP-1 RAs, the findings were descriptive and do not provide an in-depth understanding of the experiences of patients and/or staff of receiving or providing a prescription for GLP-1 RAs. Scoping searches indicate the presence of a small body of primary research which focuses on the views and/or experiences of patients or clinicians on the use of GLP-1 RAs to help control diabetes and/or promote weight loss. However, given the rapidly developing research landscape pertaining to this topic and changes in how these types of medications are prescribed and delivered, it is not certain the extent to which this existing evidence base is useful to inform the current or future configuration and delivery of services.

2 Methods

Following identification of a research aim/question, there are five recognised stages to undertaking a scoping review: (i) identifying the relevant studies; (ii) study selection; (iii) charting of the data; (iv) collation, summarising and reporting the results and (v) consultation [10, 11]. We describe how our methods align to each of these stages below.

3 Results

3.1 Study Selection

The initial searches identified 1732 records. After de-duplication 187 records were removed, and 1545 titles and abstracts were screened for relevance. After excluding 1468 records, a total of 77 full-text articles were assessed for eligibility resulting in 25 studies reported in 26 reports. One study was reported in two papers [15, 16]. This is described in more detail in the study characteristics section below. The most common reasons for exclusion at the full-text stage were study design (n = 26 reports) and phenomenon of interest (n = 10 reports). See Appendix B for the search summary table and Appendix C for a list of studies with reasons for exclusion at full text. The Preferred Reporting Items for Systematic reviews and Meta-Analyses (PRISMA) flow diagram is shown in Figure 1.

3.3 Setting

Studies were predominantly conducted in high-income Western countries. Eight were from the USA [16, 22-24, 28, 32, 35, 39], five from the UK [21, 34, 36, 37, 40], two from Italy [19, 20] and Australia [29, 31], and one each from Spain [17], Denmark [18], Canada [25], Sweden [27] and Netherlands [30]. Three studies were conducted in more than one country including USA and Poland [26], Denmark and the UK [33] and Brazil, Germany, Japan and the UK [38]. Studies were published from 2014 [34] to 2024 [18, 20, 23, 30, 31, 33, 39], although 85% of the studies were published within the last 3 years.

3.3.1 Design

Studies can be grouped into those that directly spoke with patients/public (n = 11) [16, 25, 26, 29-31, 34-37, 40], with healthcare professionals or clinicians (n = 4) [18, 22, 24, 28], those that were a mix of both (n = 3) [21, 27, 38], and those that were social media-based studies (n = 7) [17] [19, 20, 23, 32, 33, 39]. The studies by Matza and colleagues were based on the same cohort of patients and therefore have been treated as one study [15, 16].

3.3.1.1 Data Collection

Data was predominantly collected through interviews (n = 15), and where specified, these were either face-to-face (n = 4) [18, 21, 35, 36], telephone (n = 5) [16, 27, 30, 38, 40], online (n = 2) [25, 31] or a combination (n = 2) [28, 29]. In addition to interviews, Donnan and colleagues collected data through focus groups [25], Andreassen and colleagues undertook an ethnographic design also observing GP consultations [18], and Ciemins and colleagues incorporated a survey [24]. The study by Paisey and colleagues was the only study to solely use focus groups [34], whilst the study by Richards and colleagues used free text answers within a service evaluation questionnaire [37], and Edwards and colleagues used a telephone survey [26]. Whilst the setting of the studies in this group were often within a healthcare context (n = 10) [16, 18, 21, 24, 26, 28, 34-37], it was often unclear which services the patients involved in these studies were based within or had access to. The data for social media-based studies was derived from Twitter (n = 1) [17], Reddit (n = 4) [19, 20, 23, 39], Facebook (n = 3) [19, 20, 33] and TikTok (n = 3) [19, 20, 32].

3.3.1.2 Data Analysis

Across all included studies, thematic analysis was the predominant method used for data analysis (n = 10) [17, 20, 23, 25, 27, 30, 31, 34, 35, 40], followed by content analysis (n = 4) [16, 19, 32, 37], or a combination of the two [21, 38]. Two studies applied a grounded theory approach to analysis [24, 28]. Other approaches for analysis within the studies exploring experiences of prescribing/deprescribing GLP-1 RAs and taking GLP-1 RAs for all indications, included discourse analysis [18], template analysis [29] and framework analysis [36]. Two studies did not describe the analysis process [22, 26]. For the social media-based studies, Lindgreen and colleagues used an interpretive description [33], and Somani and colleagues used a large language model and artificial intelligence (AI) to create topic models from text scanning within the social media posts [39]. AI was also used in the analysis process in the study by Arillotta and colleagues [19, 20].

3.3.2 Sample

3.3.2.1 Patient/Public Studies

The sample size for all those studies that directly spoke with patients/public (n = 14), including those that were a mix of patients and healthcare professionals, ranged from five [30] to 113 [37]. Of these, 12 studies presented a mean/median age of the sample which ranged from 42.6 [21] to 67.7 years [27]. The studies with the two youngest cohorts provided age ranges of their sample; for Kan and colleagues, this was 23–30 years [30], and Turner and colleagues 14–18 years [40]. Donnan and colleagues reported that 76.2% of their sample was ≥ 40 years [25]. The percentage of females was reported in 12 studies [16, 21, 25-27, 29, 30, 35-38, 40] and this ranged from 30.8% [21] to 90.3% [37]. Racial characteristics of the sample were only reported in five studies [16, 21, 26, 35, 40] and in each case the sample was predominantly white/Caucasian ranging from 57.1% [16] to 88% (specifically white British and Irish) [21]. Of the two studies that reported ethnicity, the sample was predominantly non-Hispanic/Latino [16, 26].

Nine studies specifically listed adults (or age ≥ 18 years) within their inclusion criteria [16, 25-27, 29, 31, 35, 37, 38], with the study by Barnard–Kelly and colleagues narrowing this to patients aged between 21 and 64 years [21]. One study targeted a younger cohort, aged between 5 and 18 years [40]. Eight studies specifically included patients with T2DM [16, 27, 29, 34-36, 38], two type 1 diabetes mellitus (T1DM) [26, 31], two obesity [25, 37] and one included patients with T2DM who were overweight/obese [40]. The study by Barnard-Kelly and colleagues included overweight/obese patients with severe mental illness [21].

3.3.2.2 Clinician/Healthcare Professionals

Of the studies that included clinicians or healthcare professionals (n = 7) sample size ranged from 2 [21] to 20 [24]. The specific roles of health professionals were mentioned in three studies [18, 28]. Collectively these included seven general practitioners, six general internists, six nurses, two endocrinologists, one junior doctor and one pharmacist. Only one study mentioned age and percentage of females within their sample of healthcare professionals, this being 44.3 years and 66.7% [27] respectively.

3.3.2.3 Social Media-Based Studies

The data source of the social media-based studies (n = 7) included analysis of tweets (n = 1) [17], Reddit posts (n = 4) [19, 20, 23, 39], YouTube (n = 2) [19, 20], TikTok videos (n = 3) [19, 20, 32] and Facebook group postings (n = 1) [33]. The samples ranged from 1557 posts [23] to 780,382 tweets [17]. Only the study by Lindgreen and colleagues reported the age and percentage of females within the sample, with 55% being > 55 years old and 75% female [33].

3.3.3 Phenomenon of Interest

There was a range of experiences relating to GLP-1 RAs, as summarised in Figure 2.

Out of the seven studies interviewing clinicians or healthcare professionals, six were speaking to them with respect to prescribing or deprescribing. Out of these six, only the study by Andreassen and colleagues focused on GLP-1 RAs for weight loss, and in this study, the primary care providers discussed the use of Wegovy (semaglutide) [18]. Just one study focused on deprescribing and that was the study by Bradley and colleagues who were interested in using GLP-1 RAs to manage T2DM [22]. Four studies captured the thoughts of healthcare practitioners/clinical experts about prescribing GLP-1 RAs in the context of T2DM [24, 27, 28, 38], one specifically in patients with chronic kidney disease [28]. The one study not about prescribing or deprescribing was the study by Bernard-Kelly and colleagues, where healthcare professionals were interviewed about the logistics and recruitment of the pilot study involving liraglutide for weight loss in patients with severe mental illness [21].

Of the 14 studies that directly spoke with patients/public, the experiences of three studies were derived from either the purchasing or choosing of GLP-1 RAs for weight management [25, 30], or diabetes management [38]. In eight studies, the experiences involved the taking of GLP-1 RAs with either a current or previous prescription, six of these as a T2DM treatment [27, 29, 34-36, 40], one as an adjunct to insulin for T1DM [31], and one for multiple indications [26]. In two studies, experiences with GLP-1 RAs were as part of a clinical trial and here specific GLP-1 RAs were reported, one using liraglutide for weight loss patients with severe mental illness [21], and one tirzepatide for T2DM [16]. The experience with GLP-1 RAs in the remaining study in this group was specifically with semaglutide as part of a semaglutide-supported specialist weight management intervention for fee-paying adults [37].

In two of the social media-based studies, discussions were not specifically related to the use of the drugs but any discussion that included GLP-1 RAs [17, 39]. The experiences of five studies in this category related explicitly to the use of the drugs [19, 20, 23, 32, 33] and more specifically, one was in relation to binge eating [33], one to mental health issues [19], one substance use/addiction [20], and one to alcohol use with GLP-1 RAs [23]. Five studies included data related to specific GLP-1 RAs, these being solely semaglutide [32], liraglutide and/or semaglutide [17], and semaglutide and/or tirzepatide [19, 20, 23].

3.3.4 Funding/Conflict of Interest

Fifteen of the 25 studies reported on conflict of interest [16, 19, 20, 22, 24-26, 29, 31, 33, 35, 37-40] and out of these eleven declared some form of conflict [16, 19, 20, 24, 26, 29, 33, 35, 37-39]. Details of funding sources were reported in 20 studies [16-22, 24-26, 28, 29, 31, 33-36, 38-40] and seven of these were partially or fully funded by a pharmaceutical company [16, 18, 21, 24, 33, 35, 38]. Ten studies did not include any conflict-of-interest statement [15, 16, 19, 21, 25, 26, 28, 30, 32, 34].

3.3.5 Overview of Findings

Table 2 displays the key findings of the included studies. The studies are presented according to the five key areas addressed by the papers: experiences of prescribing/deprescribing GLP-1 RAs, experiences of patients/public purchasing or choosing GLP-1 RAs, social media-based studies, and experiences of carers and GLP-1 RAs.

3.3.5.1 Experiences of Prescribing/Deprescribing GLP-1RAs

Only seven of the 24 studies included experiences of clinician/healthcare professionals prescribing/deprescribing GLP-1 RAs [18, 21, 22, 24, 27, 28, 38]. The bulk of these (n = 5) related to GLP-1 RAs as a diabetic treatment option [22, 24, 27, 28, 38]. Three studies had a higher focus on GLP-1 RAs [18, 21, 38], the other four discussed GLP-1 RAs alongside several other medications [22, 24, 27, 28]. Only two related to prescribing GLP-1 RAs specifically for weight-loss purposes [18, 21]. In general, these seven studies highlighted some of the complexities, practicalities and costs involved in prescribing GLP-1 RAs and the considerations for adverse events of taking GLP-1 RAs. Where the studies by Ciemins and Flory and colleagues reported some uncertainties around the use of newer drugs including GLP-1 RAs [24, 28], Andreassen and colleagues reported a general willingness and trust in the medication and familiarity with its previous use as a diabetic medication [18]. Whilst there were only a few studies in this group, it is worth highlighting that perhaps the richest qualitative evidence of all included studies was from the ethnographic study by Andreassen and colleagues which included interviews from 11 healthcare professionals across three GP practices and observations of 273 consultations, 27 of which involved discussions around the use of Wegovy (semaglutide) for weight loss purposes [18].

3.3.5.2 Experiences of Patients/Public Purchasing or Choosing GLP-1 RAs

Three studies looked at the experiences of patients/public choosing or purchasing GLP-1 RAs [25, 30, 38]. Two of these discussed factors, thoughts and preferences to identify reasons for choosing GLP-1 RAs as a medication when provided with several options, one with regard to diabetes management [38], and one weight-loss (this being one of only two studies to use focus groups as a data collection method) [25]. One focused on the purchasing of GLP-1 RAs for weight loss without a medical prescription [30]. These studies had a greater focus on GLP-1 RAs generally although experiences were not solely related to taking the medication.

3.3.5.3 Experiences of Patients/Public Taking GLP-1 RAs

Out of the 12 studies that elicited patient experiences of taking GLP-1 RAs, only three were based on GLP-1 RAs for weight loss [21, 32, 37]. These focused on GLP-1 RAs, liraglutide and semaglutide specifically, however one was in the context of a pilot trial [21], one used content analysis to evaluate a remotely delivered semaglutide-based weight management programme [37], and one was a social media analysis of off-label use [32].

Patient experience of using GLP-1 RAs for diabetes management accounted for the largest group of studies (n = 8) [16, 27, 29, 31, 34-36, 40], and generally, there was a higher focus on GLP-1 RAs. Seven of these studies used interview as the data collection method [16, 27, 29, 31, 34-36, 40], one used a focus group [32], and analysis primarily was using thematic techniques (n = 5) [25, 29, 32, 33, 38]. Studies were carried out within a healthcare context, although the services that patients were seen within was generally not clear. Several of the summary findings did report some positive changes and satisfaction with GLP-1 RAs as a treatment option when compared to other medications [16, 27, 31, 35]. Common themes were identified around treatment practicalities, the want for an easy simple regime, routes of administration, treatment adherence, side effects and social and emotional factors. The impact on weight whilst taking these drugs for diabetic management was a key concept identified in six studies [16, 27, 31, 35, 36, 40]. Two studies highlighted follow-up and ongoing support and explanations with healthcare providers about clinically relevant information that would aid decision-making, as potentially important factors for increased motivation and continuation of treatment [27, 35].

One study investigated reasons for initiating or discontinuing GLP-1 RAs and whilst the population were diabetic, considerations for use included both weight loss and glycaemic control. This telephone-based survey did not describe analysis methods and GLP-1 RAs were not discussed in isolation [26].

3.3.5.4 Social Media-Based Studies

Studies that used social media content generally used descriptive methods of analysis. Four focused on weight loss [17, 19, 20, 32], one on diabetes management [33], and one on any indication [23, 39]. These studies highlight strong public interest in GLP-1 RAs and raise discussion points around public perceptions or experiences of use, however, the origin of social media posts and therefore the context of drug use was unclear.

3.3.5.5 Experiences of Carers and GLP-1 RAs

There was no evidence about the views, experiences or perceptions of carers regarding the use of GLP-1 RAs.

4 Discussion

This is the first scoping review to capture the state of evidence relating to the experiences, views and perceptions of patients, carers and clinicians of GLP-1 RAs for any indication. This review was important because, despite the abundance of clinical effectiveness trials on GLP-1 RAs, it clearly shows that the evidence about experiences of these drugs is lagging behind. This was an issue highlighted by our PPIE group, who asked questions about the reality of using GLP-1 RAs, beyond effect sizes for weight loss or safety risks. Such experience data, from patients, carers and clinicians, may be leveraged to help the development of medicines, or to support their delivery, and as such form a vital component of the broader picture of effectiveness and acceptability of a drug [41].

We conducted a thorough search for relevant literature through bibliographic databases, trial registries, citation chasing and hand searching of relevant systematic reviews. We identified 25 studies (from 26 reports) that involved qualitative methods and included experiences of GLP-1 RAs. Despite this number of studies, they were spread across all possible viewpoints and indications, so we found that there was little rich evidence to serve the range of patients, carers and prescribers who may be interested in the use of GLP-1 RAs. Across all groups of studies, there were limitations in terms of how focused studies were on GLP-1 RAs and the depth or quality of evidence available, especially with regard to the studies related to weight loss.

Only seven studies involved interactions with healthcare professionals/clinicians and out of these only two were focused on weight loss. GLP-1 RAs have recently gained a large amount of media coverage with regard to weight loss and as highlighted by the large number of discussions across various social media platforms in the social media-based studies in this review, these drugs are of high interest within the public domain. It can be assumed therefore that patients/public will approach their healthcare providers with questions about these medications. The importance of these discussions has been documented [42], as have the complexities involved with discussing weight with patients with overweight and obesity [43]. It is imperative that clinicians and healthcare professionals are equipped to have informed and engaged conversations with their patients, and carers of these patients, to not only aid the decision-making process but also to offer ongoing support for those that take these medications. What we don't know, however, because the qualitative evidence is lacking, is what clinicians and healthcare providers want to know about these medications, what support they might need to feel confident prescribing or deprescribing these drugs for weight loss and what their views might be on service delivery and wrap-around care that might be needed with these medications.

The greatest section of coverage provided by the evidence in this review was the patient experience of taking GLP-1 RAs for the management of diabetes (eight studies). Only three studies provided the patient experience of taking GLP-1 RAs for weight loss and these were limited by quantity and depth of data analysis and focus of phenomenon of interest. This collection of studies leaves an array of gaps in understanding of the patient experience of the range of weight loss drugs available. It fails to inform us of the support patients might need when taking GLP-1 RAs for weight loss. This body of evidence is vital when considering development of services linked to these medications especially when there is research highlighting that including user perspectives into health service development can enhance care delivery [44]. Given that there have been over 28 network meta-analyses of the effectiveness of GLP-1 RAs for weight loss since 2020, for there to only be a handful of qualitative studies on the same drugs for the same purpose, highlights just how far behind qualitative evidence is and this needs to be addressed [6]. Whilst some of the effectiveness studies on GLP-1 RAs collect patient-reported outcomes such as health-related quality of life, this type of data does not provide us with the same quality of insight into experiences as qualitative research.

None of the 25 included studies captured the experiences, views or perceptions of GLP-1 RAs from a carer perspective. This highlights a gap in the evidence which needs to be addressed. According to the 2021 census, there are an estimated 5.7 million unpaid carers in the UK [45]. Part of the NHS long term plan has been to shift more care out of the hospital setting and into the community [46], the role of the caregiver in supporting those with complex health conditions, like obesity, is perhaps therefore even more involved, especially with increased remote management in conditions like diabetes [47]. The views and experiences of carers with regard to medications such as GLP-1 RAs must be sought to understand complexities and highlight support needs from this perspective.

Eleven of the 15 studies that provided a conflict-of-interest statement reported some form of conflict, and seven studies were partially or fully funded by pharmaceutical companies. Ten studies did not provide any conflict-of-interest statement. Full disclosure of conflicts of interest is important for improving transparency within research and not all conflicts of interest is negative [48]. However, it is unclear whether the inclusion of a conflict-of-interest statement is sufficient to give confidence in transparency [49], and from the information provided in the included studies, it is not possible to fully interpret the impact commercial interests have had on the findings of the research. The lack of transparency about the links between the pharmaceutical companies and the research adds further limitations to this body of evidence and threatens the public's trust in the findings, a point highlighted by our PPIE group.

This review highlighted that whilst there is some qualitative evidence related to the experiences, views and perceptions of patients and clinicians of GLP-1 RAs, this was mostly with respect to diabetes management and mostly from a patient perspective. Where authors detailed the specific GLP-1 RAs that were being used, a range of drugs and doses were captured, including semaglutide [18, 37], liraglutide [21, 36], tirzepatide [16] and exenatide [36, 38]. However, based on the publication dates of studies, and the stated indications for the drugs, more recent doses of tirzepatide and semaglutide intended for weight loss were likely infrequently targeted. Perceptions of these drugs may have been captured within the studies that analysed social media posts (e.g. Arillotta et al. [19, 20]); however, the limitation with this data source means this level of detail was not available for these studies. Whilst the experiences of taking tirzepatide for diabetes were captured in exit interviews from the trial by Matza and colleagues, the content analysis techniques used, and descriptive results limit the degree of interpretation that could be gained [16].

PERSPEX members were disappointed with the poor quality of the evidence in this review which they felt did not reflect the importance of the topic to patients. Future collaborations with PERSPEX will enable us to develop a dissemination strategy of benefit to patients and carers.

5 Conclusions

Whilst this scoping review did identify primary evidence involving qualitative methods and including experiences and views of patients and clinicians in the use of GLP-1 RAs, significant gaps in this evidence were identified, in particular relating to the use of these drugs for weight loss purposes. No evidence was found that captured the experiences, views and perceptions of carers and GLP-1 RAs across any indication. These gaps need to be addressed by conducting more qualitative research, using methods that generate rich data that capture a diversity of real-life experiences from patients, carers and clinicians so that we can better understand these drugs beyond just evaluating their effectiveness.

Author Contributions

Sam Febrey: conceptualisation, investigation, methodology, project administration, visualisation, writing – original draft preparation, writing – review and editing. Michael Nunns: conceptualisation, investigation, methodology, project administration, supervision, visualisation, writing – original draft preparation, writing – review and editing. Jill Buckland: conceptualisation, investigation, methodology, visualisation, writing – original draft preparation, writing – review and editing. Rebecca Abbott: conceptualisation, investigation, methodology, visualisation, writing-review and editing. Alison Bethel: conceptualisation, investigation, methodology, visualisation, writing-original draft preparation, writing-review and editing. Rebecca Whear: conceptualisation, methodology, writing – review and editing. Kate Boddy: conceptualisation, methodology, writing-original draft preparation. G. J. Melendez-Torres: funding acquisition, conceptualisation, methodology, writing-review and editing. Jo Thompson Coon: funding acquisition, conceptualisation, methodology, writing-review and editing. Liz Shaw: conceptualisation, investigation, methodology, project administration, supervision, writing-original draft preparation, writing-review and editing.

Ethics Statement

The authors have nothing to report.

Conflicts of Interest

The authors declare no conflicts of interest.

Rights Retention

For the purpose of open access, the author has applied a Creative Commons Attribution (CC BY) licence to any Author Accepted Manuscript version arising from this submission.

Information Governance Statement

During the conduct of this report, we were not required to handle any personal information.