A qualitative study has shed light on some of the real-world experiences of taking GLP-1 RAs and how the clinical experience could be improved.
Implementing standardised guidelines for patient education and clinical support when initiating GLP-1s could lead to better long-term treatment adherence and outcomes, researchers say.
Results of a qualitative study, published in JAMA Network Open, suggest that people using glucagon-like peptide-1 receptor agonists (GLP-1 RAs) are aware that the drugs are not a standalone treatment for overweight and obesity, but their use may help push them towards making more sustainable lifestyle changes – provided there is adequate and standardised clinical support throughout their treatment journey.
“We found that GLP-1 RAs functioned as a facilitator rather than a replacement for personal effort and lifestyle change, highlighting the importance of a holistic approach to weight management. Standardised guidelines for patient education and clinical support with GLP-1 RAs may help improve quality and consistency of care, leading to better expectation management around likely adverse effects, mitigation strategies, and long-term management,” the authors concluded.
The use of GLP-1 RAs, both within and beyond the management of diabetes and obesity, is increasing despite issues with affordability, access to these drugs, and a growing list of potential adverse effects. Previous research estimates that as many as one in two people with obesity stop using GLP-1 RAs within the first year, but there is little meaningful qualitative knowledge about the views and experiences of people who use treatments such as semaglutide and tirzepatide.
“This study [aimed to provide] a nuanced understanding of the experiences of patients taking GLP-1 RA medication in a variety of health contexts, including individuals who stopped taking GLP-1 RAs, to inform optimal management practices and policies to support long-term weight management,” the researchers wrote.
Researchers interviewed 30 individuals (average age 54 years), 23 of whom were using a GLP-1 RA at the time of the interview and seven who had previously used a GLP-1 RA but had ceased treatment (although three of the seven were intending to restart GLP-1 RA treatment). The cohort consisted of 19 women, 10 men, and one non-binary individual.
Most participants had a BMI ≥35kg/m2 (n = 13), with 11 having a BMI <35 (BMI data were missing for six patients). Chronic health conditions were common; 90% of participants had type 2 diabetes, 57% had hypertension, and 40% had obstructive sleep apnoea.
Participants were asked about their experiences with starting GLP-1 RA treatment, how taking the medication impacted their behaviours, the level of support they received from their doctor(s), and their views on weight stigma or body positivity. Transcripts of the interviews were analysed to identify common themes.
The researchers identified eight main themes belonging to two overarching categories: patient-reported benefits and trade-offs, and social, clinical, and structural context.
Patient-reported benefits and trade-offs
The first theme was the reduction in food noise, psychological hunger, or appetite after starting GLP-1 RA therapy. Participants described how their relationship with food had changed, and how they felt more in control of their eating behaviours.
“Being clear-headed kind of made me be like, ‘oh, I don’t need to feel sad and eat food. Actually, let’s just not eat food at night. That’s not going to make me feel good’ and actually have the ability to do so because I didn’t have that intense craving,” said one participant who had previously used tirzepatide before stopping due to the cost.
“I don’t crave the way I used to. I call it almost frenzied…it’ll start with like, ‘I’m hungry. So I’m going to eat this.’ And then I’ll see other foods. And it’s almost like my body is like, ‘I can’t let you leave the kitchen before eating this.’ And it’s a psychological thing.…And I just don’t get that way anymore,” said another participant who was using semaglutide at the time of the interview.
The second theme related to participants acknowledging that GLP-1 RAs were not a silver bullet for weight loss but could be used to help encourage and maintain changes in lifestyle and diet.
“It kind of motivated me to exercise more because I was taking the medicine. I knew I was losing weight, so I wanted to exercise more and stuff to go with it. So I guess it motivated me more than anything,” explained one semaglutide-using participant.
Another participant described how their shopping habits and approach to meal preparation had changed as a result of using semaglutide due to difficulties finding appropriate food choices when eating out.
The third theme in the first domain covered the broad range of adverse effects associated with GLP-1 RA use. While some participants experienced minimal or no side effects, others felt the adverse effects were too much to continue with the treatment, even if certain effects could be reframed as informative or a good thing.
““I was having a lot of diarrhea and stomach upset. And I put up with it for a few months, and then I just told [my doctor] I wanted off.…I probably would have stayed on it had I not had the diarrhea and stomach cramping,” said one participant who had stopped taking semaglutide due to the unwanted side effects.
““[I] look at it as a good sign whenever I do feel upset or indigestion or feeling too full too fast. It’s warning me before I realize too late that, ‘Hey, this is the time to stop.’ So I kind of welcome that feeling,” said another participant who was currently taking tirzepatide.
Finally, participants emphasised how they were prepared to live with the adverse effects and other logistical challenges associated with losing weight. Like the previous themes, some participants felt the benefits of GLP-1 RA therapy were worth the adverse effects that accompanied treatment, while others spoke about balancing the good and the bad aspects of treatment. Inconsistent access to GLP-1s due to intense demand and limited supply was also acknowledged.
“I was willing to live with it [in reference to gastrointestinal tract adverse effects] because the results were so immediate and helpful.…I was at the end of my rope with regard to my weight. And I was like, ‘I don’t want to die overweight and unhappy.’ And so I just decided to weather it,” said one participant who was on semaglutide at the time of the interview.
“It was to the point that I had to call around to different pharmacies to see if they had it in stock. And they’re like, ‘Oh, I have 1 left. I have 2 left.’ And so I would have to hurry up and run over there and get it before somebody else could get it,” said another semaglutide user.
Social, Clinical, and Structural Context
Anticipating or experiencing stigma with using GLP-1 RAs, especially when the medication was used for weight loss rather than for diabetes management, was a common refrain among interviewees. Participants had differing views on whether they should feel like they were “cheating” or “taking the easy way out”, or that the end (i.e., improving their health by losing weight) was more important than the means.
“I’m careful about who I tell that I’m on it because I do know some people just look at it so negatively.…And sometimes I say like, ‘I’m on [semaglutide] for diabetes,’ because I feel there is a difference in how it’s viewed for diabetes vs for weight loss,” said one semaglutide user.
“Articles say there are people who would look down on you for relying on medications for weight loss. I don’t really care what people think about how I lost weight. If the subject comes up, I’ll shout it from the rooftops that I found it very effective,” said one tirzepatide user.
Participants emphasised the importance of receiving good quality information and support from their treating clinician but acknowledged that not all clinical experiences were the same.
“She [the clinician] answered all of my questions and spent time with you and stuff. And most doctors, blah, blah, blah, out the door they go, before you can ask them anything. But she wasn’t like that. She was pretty good about answering everything, explaining stuff to you in layman’s terms,” said one participant who was taking semaglutide.
“The first time the vomiting and the diarrhea happened, I had no idea it was from the drug. It took happening a couple times. I’m like, ‘This is not like me’,” said a former semaglutide user.
Related
As touched on in the first domain, several patients described the financial and temporal challenges associated with getting regular access to their GLP-1 therapy.
“I took it from January to April, and I lost 70 pounds. And then I stopped only because I had to pay for my tuition, and it ain’t cheap. And so I stopped because of that.…If I was rich, shoot, I’d be tempted to be on it forever,” said a former tirzepatide user who had stopped their treatment due to the cost.
“In terms of a problem, it’s access…the process for getting it. I think for other people who don’t have as many resources—I do a lot of research online, and I’m able to communicate and access what can work for me. I think if someone has less of that, they can’t get what they need,” one semaglutide user said.
Finally, participants spoke about a sense of connection and community with others who were using or who had used GLP-1 RAs, and the benefits of having a network to support and be supported by.
“Probably the best thing for me would be talking to other people that are taking the medication or have taken it and just getting a sense that this is something that may not be permanent.…And then you get used to it, and then you start seeing benefits of it,” said one individual who stopped taking semaglutide after experiencing a decrease in kidney function.
Another participant, who was taking tirzepatide, spoke about the experiences they had shared with their daughter, who was also taking a GLP-1.
“We both check in with each other at the end of the day about what we ate, how it felt, how much water we drank. And she’s got a smartwatch, but I’m too old for that. And so she’ll tell me about all her steps and everything,” they said.
The variability in the information and level of clinical support provided to patients during GLP-1 RA use was particularly concerning to the researchers.
“A recent joint advisory emphasized that nutritional and medical management of gastrointestinal tract adverse effects is critical to support GLP-1 RA use, including comprehensive counselling regarding likely adverse effects and mitigation strategies,” the researchers wrote. “Yet there are currently no standardized guidelines for GLP-1 RA initiation counselling.”
The researchers felt technology could be better used to further support patients: “for example, a digital health companion, for adverse effect counselling, adherence, and health care coaching in acknowledgment of expanding health care needs and limited physician capacity”, they suggested.
