Qualitative study of patients experiences and perceptions of stepping down asthma medication in primary care across England

Study design

The study adopted a qualitative methodology, using a questionnaire and semi-structured interviews from a convenience sample of primary care, stable, patients with asthma.

Patient and public involvement

Eight patients were involved in the design of the study, input into the participant information sheets (PIS), formation of questionnaires, interview questions, coding of the interview scripts (JM), reporting of the findings (JM) and reviewing of the manuscript draft. None of the patient and public involvement (PPI) members were a participant in the study.

Patient recruitment

Recruitment was facilitated through the Clinical Practice Research Datalink (CPRD). CPRD is a real-world research service that covers a network of UK primary care practices, its research services are delivered by the Medicines and Healthcare Products Regulatory Agency with support from the National Institute for Health and Care Research.

Patients were eligible if aged 18–80 years, attended a CPRD-linked GP practice and have stable asthma (≥4 preventer inhalers, <3 reliever inhalers and no asthma attack in the previous 12 months). Invites were sent out by 41 CPRD-linked GP practices that were Research Ready as per the Royal College of General Practitioners.

Eligible patients received an email, or letter, where they were invited to take part in a questionnaire. If they volunteered, they were sent a personal code to access the Research Electronic Data Capture (RED Cap) database and PIS. At the end of the questionnaire, they were invited to participate in an interview. The researcher contacted consenting volunteers to participate in an interview using purposive sampling, based on sex, age and geographical location.

All participants provided informed consent, including the publication of their anonymised responses; participants were told the length of time of the survey and interview, where the data was stored and for how long, who the investigator was and the purpose of the study. Survey and interviews were completed between February 2023 and January 2024.

Data collection

Data analysis

All completed surveys were analysed. Survey responses and demographic information from the interviews were summarised using frequencies and percentages.

Interviews were analysed according to the principles of both group-based multidisciplinary qualitative work and reflexive thematic analysis.13 14 These methodological decisions were made based on a framework of knowledge gained from the author’s previous professional interviews focused on stepping down inhaled medications and survey data presented here, which enabled, to some extent, deductive analysis, as this were based on the previous knowledge. These methods also accounted for multiple HCPs being involved in the analysis (physiotherapist and doctor), while at the same time a person living with asthma and a prescriber, valuing the importance of reflexive inductive analysis in the process. Analysis was facilitated using NVivo (Lumivero). Following transcription both JM and CIB independently coded the data and developed provisional themes. An example of a reflexive report made during this stage can be found in the online supplemental data. JM, CIB and AL met repeatedly to discuss codes and provisional themes, before further analysis reviewing the transcripts with working themes, re-working and finalising them. Interpretation of the data is provided in the results and discussion sections below.

The Checklist for Reporting Results of Internet E-Surveys (online supplemental file 1) and Consolidated criteria for Reporting Qualitative research (online supplemental file 2) were used to guide reporting.Ethics

Questionnaire: participants

143 participated in the questionnaire, 90 (63%) were female and the proportion by age were, by years: 18–29=4%, 30–49=23%, 50–69=50%, 70–80=23%. Participants were registered with 15 different GP practices, from the following regions, Northwest Coast, West Midlands, West of England, Wessex, North Thames, Yorkshire and Humber, Thames Valley and South Midlands.

Questionnaire: frequency of discussing stepping down

94% use their preventer inhaler most days. One-third were unaware, or unsure, if their inhaler contained corticosteroids (table 1). 54% had never discussed stepping down. One-fifths had discussed stepping down, more than once, with an HCP. One-quarter had intentionally stepped down their preventer themself.

Questionnaire: beliefs around stepping down

From those that had stepped down, three-quarters did so because of seasonal changes in their asthma symptoms. Only 23% stepped down because of side effect concerns. Many were unconcerned about adverse medication effects, for example, in the free text box:

I am happy with my current inhaler and see no reason to change it.

I am not aware of any side effects and always make sure to clean my teeth afterwards as advised by my dentist.

One patient noted costs as a reason they had stepped down.

When asked if they would reduce their asthma medication, if an HCP suggested to, three-quarters, agreed they would. Around 10% said they would agree due to concern about side effects. 5% would step down because of financial benefits.

A quarter of patients, even if advised by the HCP, would not agree to step down, related to worry of loss of their current good asthma control.

Maybe but I don’t want my asthma to get worse. Using the steroid inhaler has controlled my asthma much better than anything I have used before.

I do not want to change inhalers as the one I have been using for several years now is working very well and my asthma is under control.

78% would be happy to step down by switching to a completely different inhaler that they were shown how to use.

Questionnaire: medication side effects

20% had experienced side effects from their preventer, including local effects in their mouth or throat. A small number reported systemic symptoms including excess bruising, palpitations and hand tremors.

Interviews: study participants

17 patients consented to an interview. 11 women and of the following ages, by years: 18–29=1, 30–49=4, 50–69=9 70–80=3; residing in eight areas across the UK: Cornwall, Gloucestershire, Herefordshire, Cumbria, Birmingham, Hampshire, Norfolk and Blackpool. Interviews lasted 25–40 min.

Interviews: overarching themes

Four common themes were identified, (1) experiences of living with asthma and needing inhalers, (2) insufficient education regarding preventer inhalers, (3) stepping down is agreeable and possible and (4) current asthma care is suboptimal (table 2). Each theme is discussed below, supported by verbatim quotes.

Experiences of living with asthma and needing inhalers

All but one participant had asthma diagnosed over 10 years ago. Many spoke of their acceptance and understanding it was a lifelong condition, only a few had ever asked an HCP if they might achieve remission.

I don’t really think its gonna go away. So I’ve kind or resigned to the fact that I’ve got asthma. (Participant 12)

I just assumed is for life cause its not got any better. (Participant 13)

There was general acceptance of needing to use their asthma inhalers every day.

…its just a part of my routine, like it’s the last thing I do before I go to bed, like when I’m putting my moisturiser on and take my make up off and stuff… (Participant 10)

I guess I’m happy with inhalers, because they’ve just over the last years become a way of life. (Participant 17)

Participants felt they were aware of their asthma deteriorating by their symptoms, without the use of peak flow monitoring and most people self-managed their asthma.

I do it on symptoms not peak flow. I find a peak flow is too easy to manipulate. (Participant 3)

I go on, how I feel because I’ve had this so long. (Participant 7)

Furthermore, most felt they self-managed their asthma.

…cause I’ve had it so long and because I don’t go to the doctors very often, I don’t see anybody, so I do feel like I am just managing it myself. (Participant 11)

Insufficient education regarding preventer inhalers

Some participants did not know that their preventer inhaler contained steroids. One patient reported that their doctor did not know. Even those who did know, often were not aware of what the possible side effects were, or incorrectly thought the steroids were anabolic steroids.

I went into the doctors and I said…. ‘of course, my inhalers have got steroids in. And he says ‘No they haven’t got any in at all.’ (Participant 8)

I know my skin appears thin, I don’t know if that’s a steroid thing? (Participant 13)

No, its never really brought to my attention. (Participant 15)

Some participants feel they manage their asthma themselves, because they have not been told how to by a professional.

Nobody has told me. I just used both my inhalers more. I’m not sure if I am doing the right thing but my chest was tightening. (Participant 4)

If I’m a bit wheezy, say at night, and I take the salbutamol first before taking the Fostair as I think it opens up the tubes a bit. (Participant 2)

Most participants were not aware of links between the environment and inhalers.

No I haven’t [read anything about inhalers and the environment]. But is that why I’ve got this white one? (Participant 8)

No one’s ever mentioned it to me, but I can certainly imagine that they are. (Participant 15)

On asking if an HCP had ever discussed stepping down their preventer medication, many had no experience of that.

No, its not been a discussion with asthma but it has with my blood pressure tablets. (Participant 13)

No, I haven’t been told to change it. But then I don’t have much contact with the respiratory nurses. Sort of a yearly review, unless there’s something wrong. (Participant 17)

Stepping down is agreeable and possible

Several patients had previously stepped down their medication themselves and others had thought about it, but not yet tried it, often related to seasonal asthma changes.

I think I’m taking the limit on Fostair, and I think perhaps certain times of the year I actually don’t need to take that much. (Participant 2)

But I’m on one a day, one morning and one evening. I do wonder if I could reduce that. (Participant 5)

I think in my head a bit in the summer, and I think, you know, even though I know you’ve got to keep taking it but can I cut back? (Participant 7)

When asked if they would be happy to step down their asthma medication, if an HCP advised it, most were amenable to this. Reasons included reducing their effort to obtain their inhalers, reducing costs, preference not to take corticosteroids.

I don’t really want, you know, take any of the medication at all. (Participant 6)

I prefer to use mine less often if I could…. But they are a right old drag to be fair, and you got to keep ordering them, and you to pay for it before I was 60. (Participant 8)

I may be something that’d be willing to try……. Then, if I can take less of it, it means it lasts longer. (Participant 10)

I’d be willing to give anything a go. To be honest I do find, even though, like I said, they are a crutch for me, but also that I would love to not even be on them. (Participant 11)

Well I would rather not use inhalers. I’m aware they are steroids or something really don’t want to take but they control it… (Participant 13)

Two patients were not keen on trying to step down their asthma medication.

I don’t know, because it’s a case of if it works, you know its not broke don’t fix it. (Participant 7)

It has been discussed, and I’m usually reluctant to change things too much………. If its not broke, then lets not change it.(Participant 14)

On discussion about stepping down as a blanket approach for all patients with asthma at the GP practice (to help with NHS costs or the environment), most people were agreeable.

If they want to save money or the environment, as long as it it’s a similar product that will help me, its worth a try. (Participant 2)

I say, well, if that’s going to do the job that’s fine, I will have a go. (Participant 6)

If I knew it was going to do the same job with no additional side effects. I’ve not got an issue with that. I mean, you know I don’t pay and I know everything adds up. (Participant 13)

When asking how they would prefer blanket switching to be done, participants generally preferred it to be in person.

That wouldn’t bother me. I think it would be a good thing. An annual review would probably be the best time to do it. (Participant 9)

I think if they were planning on doing it, I think it would best on an annual review to speak face to face about it…. (Participant 16)

The approach to stepping down was not a major concern although some did express a preference.

Well, I guess I would prefer the lower dose in the same inhaler so I could double the dosage again. (Participant 2)

…it wouldn’t bother me. I’ve had all different shapes. (Participant 16)

Other patients felt a blanket approach was not appropriate.

I think I would say you are only really able to do it on a patient-by-patient basis…some people could, you know be seriously harmed if it was a blanket approach. (Participant 7)

And if it was a sensible, viable alternative, and I didn’t discover that they were just doing it on a cost basis, then it you know, I would consider it……. (Participant 3)

Current asthma care is suboptimal

Several patients felt asthma reviews were infrequent and a ‘box ticking’ exercise. Some people had their inhaler technique checked at their asthma review, but several did not, and many did not have an asthma management plan, or the plan was old.

Well, this [asthma review] on Friday is the first one I’ve had in probably 15 years. (Participant 2)

Yes, certainly before Covid…. and they always went through your technique. The last 2 or 3 years it’s been by phone. (Participant 13)

I take mine through a spacer, anyway, so no one checks that, but I haven’t had a review in person for 6 or 7 years. (Participant 15)

I know what you mean, and I have got the [asthma management plan] leaflet and I have filled it in, but it’s a bit of a noddy’s guide really. (Participant 14)

But those who had an asthma management plan still often used it.

The plan I’ve got now is all about day-to-day management, and its very good. (Participant 12)

As the asthma management plan is concerned with short-term management, they were asked if they would like something written that considered longer-term management.

I would say anything that can give you an idea of a future plan about either your own personal well-being, or possibly about your medication, in terms of how you or it might change over time would be enormously useful. (Participant 12)

Oh, I think that will be marvellous. That would really appeal to me. If I had something……. on a longer-term thing…because you’d know what you could do then…. And its just that bit of reassurance…. (Participant 17)

Although it would not be suitable for everyone.

I probably look at it once and put it in the drawer, which is rather what I’ve done with the asthma management plan, because well, that was a bit of a wasted piece of paper, really. (Participant 14)

Participants rarely recalled discussing long-term and future planning with an HCP.

It’s very much about what’s happening today, so to speak, what’s the peak flow saying? (Participant 1)

They just ask how I manage it now, how I’m taking my inhalers. (Participant 11)

Strengths and limitations

To our knowledge, this is the first study to explore the experiences and perceptions of patients regarding stepping down. Our participants represented a range of demography and geographical locations. To obtain a broader representation and a larger sample size we used both a questionnaire approach and interviews, the results of which are supportive of each other. We also provide repeated negative case analyses from the interviews, illustrated the complexity of asthma medication management from patient perspectives. There was an intentional selection bias in this study; we only included those with stable asthma, the only patients that stepping down is recommended for.

There are also several limitations. As we did not include patients with asthma that was not well controlled, we do not know their opinions. In the survey, we did not know if patient’s asthma was well controlled other than the inclusion and exclusion criteria as above. We only included adults and did not include adolescents or families of children with asthma. There were also fewer younger patients, 18–29 years, in the study and their views and experiences may differ. We only included people living in England, where views, particularly around prescription costs may have differed in other countries within the UK where all prescriptions are free. We did not know the socioeconomic status, comorbidities, smoking history or other factors that may have influenced the views and experiences of the participants. Our study only includes the views of those patients willing to complete the survey which may bias towards those more interested in their asthma treatment as the study invitation letter included ‘We are asking you because we want to hear patient’s views and experiences on their asthma inhalers. Part of the survey will ask if you or a healthcare worker has ever reduced your inhaler doses’. This may have led to a higher proportion of those surveyed and interviewed being open to the concept of stepping down their medication, although it is notable that the majority of them had not inquired about stepping down.