Barriers and facilitators to using aspirin for preventive therapy: a qualitative study exploring the views and experiences of people with Lynch syndrome and healthcare providers

We interviewed 15 people with LS (Table 1), and 23 healthcare providers across multiple disciplines (Table 2). Interview duration ranged from 22 to 60 min. Findings were organised into three overarching themes, which were mapped onto the TDF (Table 3).

Table 1 Description of the people with LS interviewed (n = 15)Table 2 Description of the healthcare providers interviewed (n = 23)Table 3 The themes, and corresponding facilitators, barriers, and domains within the Theoretical Domains Framework (TDF; version 2)Considering potential harms and benefitsConsideration of benefits

Participants considered the benefits of aspirin and the evidence supporting this recommendation in their decision-making. Participants with LS typically had high confidence in the evidence supporting the use of aspirin for preventive therapy. Among healthcare providers, confidence in the evidence varied. Specialists were positive about using aspirin, while GPs and community pharmacists tended to be more sceptical.

“I think it’s amazing that there is a drug that is so cheap and with lots of safety data and been used for 100 years that has a demonstrable and significant effect on cancer prevalence in Lynch syndrome.” (S.D., specialist clinician, 0-10 years’ experience)

“So the answer is, at the moment, for me the jury’s still out and it sounds like it is from the latest studies as well.” (H.H., GP, 31-40 years’ experience)

Although GPs were unaware prior to the interview of the NICE guideline NG151, this organisational body was considered to be a trustworthy source. Learning of the NICE recommendation appeared to increase several GPs’ confidence in the effectiveness of aspirin for preventive therapy and their comfort prescribing aspirin for this purpose.

“You know, and I’m kind of thinking if someone came in, I’d kind of think god, if it’s in NICE guidelines I’d kind of very much believe it.” (T.Y., GP, 0-10 years’ experience)

Consideration of harms

Several participants with LS and healthcare providers discussed aspirin’s adverse effects as an important barrier to using or recommending aspirin. In considering dose, participants with LS were more worried about using higher doses of aspirin, such as 300 mg or 600 mg, because of potential harms.

“There’s no way I would take that 300, oh my god, no, if I was having as many problems with 150.” (L.O., participant with LS)

Among healthcare providers, GPs and community pharmacists in particular expressed concerns about patients using aspirin at higher doses, due to the increased risk of side-effects such as gastrointestinal bleeding.

“I think I’d be less hesitant if it was a lower dose medication such as 75 or 150mg, I’m clinically comfortable with. You know, 600mg doses is not something I’m used to prescribing, […] So I’d be worried about their bleeding risk, especially if they were elderly and frail.” (F.F., GP, 0-10 years’ experience)

“You know, my thoughts would be that 600mg would be quite a significant risk to patients at risk of GI issues.” (B.K., community pharmacist, 0-10 years’ experience)

Across both groups, not all participants considered the risks of aspirin to be a prominent factor in their decision-making, partly because aspirin is a well-known medication that can be purchased from pharmacies without a prescription.

"People sort of take aspirin a bit like, you know, paracetamol. So, so many millions of people have taken it that it seems that the side-effects that you might possibly get would be minimal." (Z.B., participant with LS)

“I think anything that a patient can happily buy over-the-counter, whatever reason, sits a little bit happier with GPs.” (F.P., GP, 0-10 years’ experience)

Most GPs discussed prescribing proton pump inhibitors (PPI) alongside aspirin for patients at higher risk of gastrointestinal ulcers and bleeding [25], which in turn lowered their concerns regarding the harms.

“I think we rarely actually see GI bleeds and things, I think we've got better at prescribing […] like Omeprazole [a PPI] you know something that’s going to reduce acid and things alongside.” (T.Y., GP, 0-10 years’ experience)

Considering the harms vs. benefits

Most participants with LS felt that the potential benefits of aspirin for colorectal cancer prevention outweighed their concerns about aspirin’s side-effects. This was generally supported by healthcare providers.

“My father’s had two cases of bowel cancer, and the second one it nearly killed him, I don’t want that, I don’t want bowel cancer. So yeah, for me I’ll take [aspirin] to reduce that.” (A.D., participant with LS)

“Obviously there are potential side-effects and risks but if those can be ruled out, the benefits of taking it are huge, particularly for the kind of sub-group of patients that we deal with.” (M.C., genetic counsellor/nurse practitioner, 11-20 years’ experience)

However, some patients explained how they made difficult trade-offs when deciding to take aspirin.

“I’m not particularly happy about taking aspirin […] it could trash your stomach, it could trash other parts of your body. But if it reduces your risk of cancer you feel there’s a gun to your head in a sense.” (L.O., participant with LS)

The lack of strong evidence to support an appropriate dose of aspirin which balances the benefits and harms, and the absence of a recommended dose by NICE for this reason [6], was a concern among several healthcare providers and participants with LS. Among participants who did not use aspirin, some felt that at present the risks outweighed the benefits for them.

“I find those discussions about dosing quite tricky […] we have a rough guidance of the dosing but we don’t really know exactly what that’s going to do and whether we need to change that in the future once the CaPP3 dose comes out.” (A.P., specialist clinician, 0-10 years’ experience)

“The benefits have had to outweigh the risks, but at the moment not until somebody tells me exactly how much I should be taking, I’m not going to start on [aspirin].” (R.R., participant with LS)

Healthcare pathwayPerceptions of the ideal healthcare pathway

Healthcare providers across professional groups viewed specialists as patients’ main source of information regarding aspirin for preventive therapy; they were perceived as having the requisite expertise in this topic area. Healthcare providers agreed GPs were responsible for prescribing aspirin, as they will have access to patients’ medical histories to check for potential contraindications.

“I think [aspirin] would probably be kind of started in conjunction with specialist advice but then we would carry on prescribing it long-term.” (K.M., GP, 0-10 years’ experience)

“I’m primarily focusing on information giving in that appointment [with the patient] and it’s important if you are going to start a new medication that you do that in conjunction with your GP.” (A.P., specialist clinician, 0-10 years’ experience)

However, GPs were mostly unfamiliar with the evidence for using aspirin for colorectal cancer prevention, and required further support from specialist clinicians before prescribing. GPs wanted clarity on the appropriate dose to prescribe, the supporting evidence, the referring clinician’s opinion on this evidence, and a clear recommendation to prescribe.

“Well I would want to know what the recommended dose and timescale was and it would also be helpful to know a bit more about how much it reduces the risk and about what the risk reduction actually is.” (Z.E., GP, 11-20 years’ experience)

“So as long as it said please prescribe, if it said please consider prescribing then again it’s a more complicated scenario, […] It depends on what the wording is from the geneticist.” (G.H., GP, 21-30 years’ experience)

Specialists, across areas such as genetics and gastroenterology, agreed their role included supporting GPs who were considering prescribing aspirin for a patient with LS.

“I see lots of patients with Lynch, so I feel it’s a decision in the sense that we’re better placed to make and I feel it’s only fair that I could give the GP as much guidance as I can in that.” (O.I., specialist clinician, 0-10 years’ experience)

Healthcare pathway in practice

In reality, pathways to treatment were inconsistent. Despite specialists accepting their role as information providers, not all participants with LS were told about aspirin in a healthcare setting. Some participants first learnt about aspirin through other sources, such as the charity LSUK.

“Yeah, I have actually [been told about aspirin], not through the hospital that I’m under, or like my GPs or anything, mainly […] from joining the [LSUK] side.” (B.H., participant with LS)

Although clinical geneticists viewed their role as providing information on aspirin, not all GPs made use of this source. Instead, several GPs were more likely to approach the patient’s colorectal cancer team for discussions.

“Well you’ve even also got local sources, so we get access to individual colorectal teams, for instance. […] We might occasionally use genetics but I haven’t used a geneticist for yonks really, so I couldn’t say hand on heart that I would use them straightaway.” (H.H., GP, 31-40 years’ experience).

Several participants with LS found the pathway unclear. They were unsure which type of healthcare provider they should approach to discuss aspirin further with, and where they should acquire the medication from.

“I mean, my first instinct would just be go to the pharmacy and buy it but I don’t know what the dose is that you get there […] so I guess I’d try just to buy it first but if it wasn’t the right dose I guess I’d go to maybe the GP and get it prescribed.” (Z.B., participant with LS)

Not all participants with LS were aware of the option for aspirin on prescription, and instead purchased aspirin from the pharmacy. In contrast, community pharmacists felt it was not their role to sell higher doses of aspirin (> 75 mg) for preventive therapy to patients without a prescription. The lack of licence for this indication was a particular issue for this group.

“I couldn’t imagine it getting to the point where we’d be […] selling aspirin over the counter for that indication, […] it would be off-label use.” (B.K., community pharmacist, 0-10 years’ experience)

Equally, several participants with LS were recommended by a specialist clinician to approach their GP for aspirin on prescription and had obtained the medication through this route.

“My GP actually prescribed the aspirin and they never sort of questioned it, […] they just said, ‘oh well if it’s been recommended by the geneticist, fine we’ll do it’.” (T.R., participant with LS)

However, not all participants were comfortable approaching their GP to discuss aspirin, due to previous negative experiences with GPs who were unfamiliar with LS.

“I find that the GPs aren’t very clued up about Lynch syndrome. […] So no, I don’t find going to the GPs very useful, unfortunately.” (Z.B., participant with LS)

Patients’ level of interest in aspirin

There was a strong interest in using aspirin among participants with LS currently using the medication. These participants typically considered aspirin a high priority, and were motivated to research the use of aspirin for preventive therapy and the recommended dose.

“So I gathered all the information, read all the information, had a look around, went onto the [LSUK] site […] so I did a lot of research into it, and basically sort of discovered really that I should be on about 300mgs aspirin a day.” (A.D., participant with LS)

Using aspirin for preventive therapy appeared to be a lower priority among participants who did not use the medication, especially when compared with other life and family priorities. Furthermore, other preventive options for LS seemed to be considered higher priorities, or more effective options, such as surgery and surveillance.

“I wasn’t actually given any other [information from GP surgery] than ‘oh well there’s not a lot of research that shows it’s kind of very beneficial’ […] I mean, I could’ve like researched and everything in the meantime but as I say, life gets in the way.” (K.J., participant with LS)

“Well I suppose I’m not so worried about my bowel cancer coming back because I would just have the lot removed, […] and I think it would be picked up before it could do me any damage.” (H.A., participant with LS)

A patient’s strong interest in aspirin was an important factor for GPs. Several GPs described feeling more inclined to prescribe aspirin, especially higher doses, for patients who were already keen to use the medication and appeared knowledgeable on the subject.

“If the patient really wanted to start it, they’ve done the research, they understand the risks and benefits then yeah, I probably would feel comfortable [prescribing aspirin].” (M.V., GP, 0-10 years’ experience)

The tendency to be more willing to prescribe aspirin for patients who have already decided to use the medication may be problematic, as several participants with LS were uncertain and wanted further guidance. In particular, some participants wanted a clear recommendation to use aspirin from their healthcare provider, based on such factors as their medical history.

“I want somebody to tell me you know, yes this would be ideal for you, or to say no, because you’ve got this, […] rather than it just be my decision." (R.R., participant with LS)

The relationship between patients’ prior preferences for aspirin and acquiring a prescription is further illustrated by two individuals. Participant A.D., who wanted to use aspirin at 300 mg, described how they encountered recurrent barriers before they acquired a prescription at this dose.

“ [GP] rang up and said, “Yes, you can have it on prescription,” and went and had a look at it, and basically it was for 75mgs, and so I went back to see him and I said, “This really isn’t, you know, enough,” […] And then finally after probably a good couple of months going backwards and forwards he agreed that I could take 300mgs of aspirin a day.” (A.D., participant with LS)

Participant K.J., who was more uncertain, encountered resistance from their GP surgery and subsequently did not initiate aspirin.

“When I then contacted my GP surgery to get a prescription for that I was kind of put off getting it, probably thinking about it now due to their lack of knowledge.” (K.J., participant with LS)

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