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Tell me about your hay fever: a qualitative investigation of allergic rhinitis management from the perspective of the patient

Tell me about your hay fever: a qualitative investigation of allergic rhinitis management from... www.nature.com/npjpcrm ARTICLE OPEN Tell me about your hay fever: a qualitative investigation of allergic rhinitis management from the perspective of the patient 1,2 2,3 2,3 1,2,4 Biljana Cvetkovski , Vicky Kritikos , Kwok Yan and Sinthia Bosnic-Anticevich Allergic rhinitis (AR) is sub-optimally managed in the community and is responsible for a significant health and economic burden. Uncontrolled AR increases the risk of poorly controlled asthma and presents an increased susceptibility to thunderstorm asthma. With the availability of treatments over-the-counter, bypassing the health care professional (HCP), the role of the patient is paramount. Research on the role of the patient in AR management in the current environment is limited. This study aims to explore the patient perspective of AR management and understand why it is sub-optimally managed in the community. Patient perspectives of AR management were explored utilizing a qualitative, phenomenological approach. Adults with AR were included in the study and interviewed. Transcripts were analyzed for recurrent themes and emergent concepts. Forty-seven participants with AR were interviewed about their experiences. Patient reports of delayed diagnosis, treatment fatigue and confidence in the ability to manage their AR themselves, heavily influenced their management preferences. Patients also described barriers associated with AR management including financial expense as well as being mistaken for having an infectious disease. Patients described examples of the impact on their quality of life caused by their AR, yet they strongly believed they could manage it themselves. This belief that AR is a condition that should be entirely self-managed, contributes to its burden. It amplifies patients’ separation from HCPs and having access to guidelines aimed at optimizing their AR control. npj Primary Care Respiratory Medicine (2018) 28:3 ; doi:10.1038/s41533-018-0071-0 INTRODUCTION and the subsequent medication self-management practices of 21–25 individuals with AR. Of particular interest is the latter. In 2014-2015, allergic rhinitis (AR) affected 4.5 million i.e., 19% of It is well recognized that patient self-management plays a major Australians, becoming the most prevalent respiratory condition in 26–28 role in the successful management of chronic illnesses. While the mid-teenage years; peaking in working aged adults. Its 2–7 this has been explored in the related field of asthma, in which prevalence and poor control is of worldwide concern. The patient medication self-management has been shown to play a burden of this highly prevalent respiratory condition, while often significant role in overall treatment success; our understanding trivialized, is staggering, with uncontrolled AR impacting on the of medication self management in AR is limited. While large-scale quality of life (QOL), work productivity, school performance, social 8–10 studies in Europe and the Americas have provided us with interactions driving ability and sleep of those who suffer from detailed information about patient medication preferences along the condition. with the co-existence of bothersome symptoms and loss of In Australia, the burden of AR has recently been highlighted as a 3,22–25,30,31 productivity, they fail to explain why patients chose to 11,12 consequence of a fatal “Thunderstorm Asthma” event. During self-medicate in the way they do, despite often living with sub- this event, an unprecedented, unexpected demand was made on optimally managed AR. health care facilities by people in respiratory distress, 90% of The aim of this study is to gain an in-depth understanding of 13,14 which had a history of AR. Questions arose about how such a the experiences, beliefs and reasons behind the medication self- fatal event could have been avoided, given the availability of management practices of patients with AR. comprehensive, evidence-based guidelines both for the treatment 15–19 of AR and asthma. AR management guidelines present a step-wise strategy, which RESULTS couple allergen (trigger) avoidance, medication management Fifty-seven people contacted the research team expressing (including over-the-counter [OTC] and prescription medicines), interest in participating in the study. Of these, forty-seven people and immunotherapy in specific, severe cases of AR. However, with AR from New South Wales, Australia, were interviewed for despite this multidimensional approach, the reality is that allergen this study, with the remainder not being able to be contacted by avoidance is not effective for most patients and immunotherapy is the research team following initial expression of interest. The 47 limited to only a very select group of patients, thereby the participants, were aged from 18 to 86 years of age with a median mainstay treatment of AR relies on medication management. age of 39 and 28 were female. Eight participants were from rural Therefore, in exploring the burden of AR, attention must be drawn communities in NSW and 39 from the Sydney metropolitan area. to the medication management of AR by health care providers Interview duration ranged from 9 to 67 min with an average 1 2 3 4 University of Sydney, Sydney, Australia; Woolcock Institute, University of Sydney, Sydney, Australia; Royal Prince Alfred Hospital, Sydney, Australia and Sydney Local Health District, Sydney, Australia Correspondence: Biljana Cvetkovski (biljana.cvetkovski@sydney.edu.au) Received: 20 August 2017 Revised: 9 November 2017 Accepted: 2 January 2018 Published in partnership with Primary Care Respiratory Society UK Tell me about your hay fever: a qualitative investigation B Cvetkovski et al. Table 1. Semi-structured interview guide Primary question Secondary questions Clarification Tell me about your experiences with allergic rhinitis/hay How long have you been experiencing these What times of day/year do you fever (symptoms, challenges, satisfaction) symptoms? experience worsening symptoms? What treatments do you currently or have What do you find makes them better or previously tried for your symptoms? worse? What prompted you to try these treatments? How would you describe the impact of these symptoms on your daily activities? duration of 23 min. Four interviews were conducted face-to-face at My parents did everything under the sun. They’ve gone the Woolcock Institute and the remainder were conducted over everywhere. P31 the telephone. Participants who chose to participate over the As a result of this, they reported a sense of treatment fatigue, telephone were sent participant information and consent forms i.e., a sense of having explored all available options with regards to via email or post based on their preference. The majority of treating their AR and having exhausted any desire to pursue recruited participants were on the Woolcock’s volunteers database further investigations or treatment options. They had concluded and had responded to the letters of invitation or had heard of the that there was nothing available to eliminate their symptoms. study through snowballing. They had also developed skepticism about products that claimed Data saturation was obtained following the forty-second to be “new” and would eliminate AR. Participants no longer interview after which no new information was described by the believed that there were any options that they had not explored subsequent participants. However all forty-seven volunteers were and that all new products were similar to old products, just in new interviewed to ensure saturation. packaging or marketed differently. They felt they could no longer Seven themes were identified that best represented the generate energy to explore “new” treatments as they assumed patient’s perspective of AR management. The semi-structured they would be disappointed with the efficacy as they had been in interview guide appears in Table 1. This already appears in the the past with other products with similar claims. Consequently, methods Data Collection Section. these participants no longer enquired about treatments with HCPs nor did they do their own research about AR. They stated that the only thing that sparked their interest to reconsider their AR Delayed diagnosis and misdiagnosis management were media reports about a “breakthrough” in AR A large proportion of participants reported a challenge associated treatment. with getting a correct diagnosis. In most of these cases, they had experienced symptoms from childhood and reported symptoms I keep my ears open for breakthroughs, but there aren’t any. P1 for many years. They were assumed to have a cold or flu and expressed relief at the point when it had been diagnosed as AR. A huge burden being lifted as a result of knowing what their There’s just nothing I can do to relieve it and the other thing symptoms were caused by, rather than relief of symptoms. They too is I’ve given up buying drugs over the counter because I reported seeing multiple HCPs before a suitable treatment was know they don’t work. P10 found. Why do I always have a cold? P13 Confidence in their ability to manage AR themselves Participants reported confidence in their ability to manage their There was also a subset of participants who had identified as AR independently. After years of trying different medications and having developed AR in adulthood. They reported a delay in consulting HCPs, patients felt that they had learnt enough and diagnosis, they did not expect to develop AR later in life, often tried enough treatments to determine for themselves what was they had never experienced any symptoms earlier in life and best. This was especially the case when considering symptom although less common, some participants reported having being relief, identifying risk factors and preferences with regards to treated for asthma and only later being diagnosed as having AR mode of treatment delivery. With regards to symptom relief, the instead. participants expressed a high tolerance of their symptoms and were satisfied with a small reduction in symptom severity. I’m 52 and I didn’t get asthma until I was in my 40 s and then a few years ago I had what I felt was a cough that just kept going As soon as I take them all the symptoms dissipate. They won’t on and on. The doctor said no, it was hay fever. So it was certainly go away. But they certainly dissipate. P30 allergic rhinitis. P10 So Zyrtec, Beconase, the sprays. Like the nasal sprays and the tablets, whatever brand really. Claratyne, I’ve tried all of them. Treatment fatigue P57 The delay in diagnosis of AR, especially in childhood often meant participants had been exposed to a gamut of tests and treatments The chronic nature of AR allowed them to recognize patterns of prior to and following their diagnosis of AR. They described a symptoms, identify triggers and develop avoidance strategies. childhood filled with many investigations, medications, doctor’s Patients felt that HCP appointments were a significant impinge- appointments and alternative treatment options. ment on their own time and that their own efforts in managing npj Primary Care Respiratory Medicine (2018) 3 Published in partnership with Primary Care Respiratory Society UK 1234567890():,; Tell me about your hay fever: a qualitative investigation B Cvetkovski et al. their AR were a more efficient use of their time. Using their own this meant a significant reduction in their symptoms and skills to manage their AR let them accommodate their treatment symptoms thereafter were manageable with the occasional use preferences best, both with respect to method of delivery and of oral antihistamines. For others, it cemented the ideology that expectation regarding symptom relief. Some participants pre- nothing would cure their AR and these participants were not pared for a predicted worsening of symptoms due to an motivated to try any further treatments. upcoming exposure to triggers by taking antihistamines pre- ventatively, based on their own experimentation and belief for I wait for the symptoms to occur because I’m very anti-drug and the symptoms are so severe to the point where I actually what is best for them. can’t work, because it is like a head cold. P30 I usually get itchy eyes when the pollen count is really high and also when it’s dusty and I sneeze a lot as well. P18 I have to take something otherwise I am a mess. Only when it gets really really bad. A couple of times a week. P56 That is more of a preventative measure - I stock up on it 2 weeks in advance - which minimises the effect of the I’d use them just while there is a lot of flowers and dust in the symptoms. Heading up to spring and so the body, I believe, air, the change of season in springtime and that sort of thing. If builds up a sort of immunisation or builds up a resistance to it started coming on then I’d use it for a week or something the hay fever. It allows me to deal with it on a - in a much and see how I went without it. P50 better fashion. P31 The final group, which medicated to be symptom free, used more medicines more frequently than the other two groups. AR Management preferences presented a significant burden to them and their quality of life There were three predominant sentiments that were reported by that they were willing to take regular medicines preventatively to participants when describing their preferences for managing their try and control their symptoms. This cohort of participants AR, all of which related to medication use and selection. Firstly, a reported an exploration of alternate medicines in order to relieve preference not to medicate at all with the exception of a nasal the symptoms of AR. They explored alternate therapies in saline wash or mist. Secondly, those who reluctantly medicate, circumstances where traditional medicines had not met their when they felt the symptoms were otherwise intolerable. Thirdly, needs. These participants were most likely to have undergone those who want to take any form of treatment in order to be immunotherapy. symptom free. The first group that had a preference not to medicate, [What prompted you to see a naturopath in the first place?] represented people who did not believe that medication worked and those that had beliefs against medication. A subset of participants felt that they had tried all available AR treatments and Just desperation I think. P21 nothing cured or completely eliminated their symptoms, therefore taking symptom-relieving medicines was a waste of time and an unnecessary risk of experiencing adverse effects. Other partici- I’d have to rely on them daily. To be able to cope, yeah…to pants who wished not to medicate, said that they ideologically work I’d have to rely on them - even the eye sprays - to get me preferred not to use medicines for their AR. through the day because it gets really bad, really irritating. They [symptoms] just reduce for a few hours. P39 So I don’t really like sticking chemicals up my nose. P25 An individuals’ approach/attitude to taking AR medicine was not influenced by the severity of symptoms or the impact on I want someone to tell me that just having a carrot a day or quality of life. Regardless of the participant’s severity or something gross like a zucchini will fix everything. I’ll be like medication preferences, there was an overwhelming preference ‘ok, I’ll do it if I really have to’. P17 for use of oral medicines due to ease of administration and use, portability, palatability, perceived effectiveness and onset of action (compared with INCS). Participants reported that when I don’t particularly like taking medication. P19 they were using a medicine, which they perceived as adequately relieving their symptoms, they would not explore alternative The second group medicated when they perceived it necessary, options. There was however a belief among the majority of sharing some of the sentiments of participants who preferred not participants that they would develop a tolerance to oral to medicate at all. They too felt that no treatment completely antihistamine medicines if they repeatedly used the same eliminated their symptoms, hence did not sense a purpose in product. They believed that this could be avoided if they using regular medicines and experiencing the expense and occasionally were to switch brands. commitment associated with it. They preferred not to have to use any medicines, but in some circumstances perceived their I alternated between them, but I found the Claratyne was the symptoms to be intolerable and unacceptably impeding on their most effective, so I ended up just buying Claratyne from then productivity or quality of life. In such circumstances, this cohort of on. P56 participants had a preference for using non-sedating oral antihistamines for their ease of use, availability, onset of action and perceived effectiveness. The majority of participants had at No it[non-sedating antihistamine] seems to be working well, some point used an intranasal corticosteroid [INCS], however very cost effective, I don’t get any side effects from it, but yeah. P44 few were still using it. The main reason for discontinuation was the perception that it did not work, even though they had used it for weeks or months at a time. Some participants reported they had Because [antihistamines] are smaller and I can swallow them undergone immunotherapy at some stage in their lives. For some, without water. P13 Published in partnership with Primary Care Respiratory Society UK npj Primary Care Respiratory Medicine (2018) 3 Tell me about your hay fever: a qualitative investigation B Cvetkovski et al. disease. For some, this meant that they deliberately did not I didn’t find them [INCS] that effective. I still use them if I feel discuss their AR with anyone and internalized their management like I have to. entirely. They felt that discussing it with others would not achieve anything except bring them more unwarranted attention. But I just don’t find them that effective. So I don’t really rely on The whole idea is, in front of people I want to just come across them to do as unaffected. P47 Participants reported that the symptoms of AR brought what they need to do. P57 unwarranted attention, particularly sneezing and nasal conges- Some, participants had consulted an ear, nose, and throat tion. They felt that there is a stigma associated with sneezing and surgeon. Where additional nasal issues were identified and ear- nasal congestion due to others misinterpreting the symptoms as marked as potentially benefitting from surgical intervention (e.g., belonging to a contagious cold or flu. Participants reported having deviated septum), there were mixed responses in the uptake. to constantly explain to people that they have AR and are not There was almost an equal distribution between people who were infectious and do not need to be isolated or kept away from willing to explore surgery as an option versus those who preferred school or the workplace. The symptoms of AR also caused them to to avoid it. Some thought a one-off intervention was worth feel embarrassed among their colleagues and peers. considering where others felt that the risk and significance of There’s a big stigma and focus on people sneezing…so I often surgery substantially outweighed any potential benefit. Some say to people I don’t have a cold, it’s hay fever. P14 participants reported a significant improvement in the ability to breathe after they had surgery, only then realizing that they had accepted a poor standard of breathing in the past. It’s embarrassing you know, having these symptoms. P14 Financial expense Participants reported that in some circumstances their choices People think I’ve got a cold. PH regarding AR management were based on cost. Cost arose as an issue when describing treatment selections, visits to a doctor and procedures to formally diagnose AR. The perception of financial We’ve got a bridge club and they always say, ‘if you’ve got a burden of AR treatments was evaluated based on the person’s cold, stay home, we don’t want you here’.I’ve had to tell perception of its monetary value versus perceived effectiveness. In people, ‘well it isn’t a cold that I have. I’ve just got it all the some instances further investigation, such as a skin prick test, was time’.P7 deemed expensive and were not perceived as necessary. Participants felt they had identified their triggers through observation of pattern and exposure history. Similarly, the Impact on wellbeing financial expense of medication was questioned based on how A theme that repeatedly displayed variation among participants effective it was perceived to be and the difference it made to the was the perception of the impact AR on their life. Responses person’s quality of life. ranged from AR being regarded as an “inconvenience” to something that if persistent, can make them feel depressed. [Preference for medication], yeah by price basically. P34 Participants who felt AR was a nuisance, regardless of its severity, did so because they compared it to having a life-threatening condition. Ultimately, they felt that AR did not warrant more A lot of it depends on how expensive they are as well. P41 attention than they had given it because it would not end their life. That’s always been a goal of mine to be able to have the pre- You get not depressed but kind of like depressed I suppose the test to find out exactly what the triggers are. But I pretty much word is. It’s very debilitating. You can’t believe it but it’s true. know what they are-know not specifically, but I know what P33 they are. Pollens and dust pretty much. It doesn’t really bother me, so I haven’t done it and it’s expensive. P50 It is an annoyance, but it’s not a lethal, life threatening disease or anything. It’s not life crippling. It’s just inconvenient, really. It worked quite good[INCS] but at the time I didn’t have the P56 money to buy it because it was so expensive. P25 No, no that bad [not symptoms everyday]. I’d neck myself if it I had to use it-to do one spray of the steroid one and another was every day. P2 spray of the other one otherwise it wouldn’t work. Until eventually the steroid did take over but it didn’t happen Many identified the impact of AR on daily activities extended straight away. It was really annoying because I’d spent all this beyond themselves and their immediate family. money on the spray but I had to use the other one. P25 I have a young family now so sleep is a little more precious to me [than it used to be, hence have sought referral to a Unwanted attention specialist]. P8 There was a strong sentiment among the participants that they did not want to be labeled as having an illness. They referred to it People with AR were more likely to notice the impact of AR on as nuisance or an irritation, rather than a chronic respiratory their life when it interfered with their workplace productivity. npj Primary Care Respiratory Medicine (2018) 3 Published in partnership with Primary Care Respiratory Society UK Tell me about your hay fever: a qualitative investigation B Cvetkovski et al. Treatment options were explored and determined based on how Patients believe that AR is a condition that they should be self- AR affected their ability to perform at work. Participants became managing. This is influenced by the availability of medicines over tolerant to a certain impact on their quality of life brought upon the counter (OTC). As patients try different medicines, they by AR. This tolerance would be challenged and further treatment develop confidence in their ability to do so, continuing the cycle would be sought when the impact on quality of life was of self-management and treatment trials. Being able to choose heightened, sometimes due to factors unrelated to AR, (e.g., poor their medicines OTC facilitates them in accessing their preferred sleep quality associated with AR was no longer tolerated when oral, quick relief, occasional-use medicine and avoid the disliked 23,38 sleep quality was also challenged with the arrival of a newborn intranasal sprays. The preference for quick relief occasional- baby). use medicine is evidence of their perception of AR as an acute condition, rather than a chronic disease. I’m tired and it’s hard to concentrate and feel unwell. P14 This research highlights that it is not just the availability of OTC medicines that drives the patient to self-manage their AR. These patients reported that they know what works best for them and To go to work, I’d have to rely on them [antihistamines],even suggested that their HCPs have not entirely understood their goals the eye sprays, to get me through the day because it gets really for their AR. Understanding of patients’ treatment aims and goals 39–41 bad, really irritating. P39 has been shown to improve their AR management and should be taken into account when developing their management plan. In considering these findings it is important to consider possible I can’t work, now I’m allergic to rats… I couldn’t continue with solutions. Possible solutions should include simple pathways for research in that area. A career working with animals would recognition and diagnosis of AR in primary care, and the have been out for sure. P14 development of tools and support mechanism for patients through therapeutic partnerships with HCPs. Of critical impor- tance, is that tools available to patients should be dynamic, accommodate for changing AR severities and provide guidance in DISCUSSION instances of a “flare up” as seen in written asthma action plans. This research provides important fresh insights to the reasons why The MACVIA-Allergy Diary App is able to provide the patient people with AR sub-optimally manage their condition and goes to with some guidance on self-managing their AR but further explain what has led to patients choosing to carry the burden of research needs to be conducted to investigate how HCPs can best AR management themselves. This study of patient’s perspective collaborate with patients to optimize its use. has identified that patient’s choice to self-manage their AR is This study was potentially limited by the sample, which is likely linked to sub-optimal experiences with HCPs and confidence in to under-represent patients with mild AR. While a majority of their own abilities to treat their AR with OTC medicines. AR participants reported being diagnosed with AR, the inability to guidelines are developed for use by HCPs and by self-managing confirm the patient’s diagnosis of AR is a potential limitation. It their AR in isolation, patients are moving further away from the should be noted however that the demographics of the study reach of these guidelines and into unguided territory, compound- population were consistent with that reported previously for the ing the burden it has on the community. Asia-Pacific region. In conducting this research, one striking point was noted; when In conclusion, our findings strongly demonstrate that the patients consider the management of their AR, there is a patient’s experience with AR is unique, varied and very much a dominant focus on medication management. While self- condition in which patients self-manage with medications that are management is multifaceted and includes elements of trigger easily and abundantly available to them. AR management is avoidance and monitoring in addition to medication manage- influenced by patients’ experiences prior to receiving a diagnosis ment, the patient’s perspective of management and their role in it following which their knowledge and beliefs about AR and its is focused on pharmaceuticals and the options they have. There treatments are formed. These results highlight the critical need to are several aspects that impact on this, as highlighted in the increase the dialog between HCPs and their patients regarding AR, following discussion. improve the understanding of the significance of AR and optimize The delayed diagnosis/misdiagnosis of AR plays a formative role its management and for HCPs to acknowledge patients’ expecta- in the patient’s sub-optimal management. Disenchantment with tions and beliefs with regards to treatment. HCPs must engage HCPs’ ability to identify their problem steers them on the path of patients, embrace AR self-management and work collaboratively self-management, in a sense, towards a “self-help” approach. This with patients to optimize their AR management. goes to set up a vicious cycle, and increased burden of AR, as delayed diagnosis results in a delay in seeking medical advice until symptoms are intolerable, a finding similar to that experienced METHODS by patients with chronic rhinosinusitus. This study took the form of a qualitative exploration of patients’ Treatment fatigue (defined as a decreased desire to explore perspectives of AR management and was conducted as a part of a larger study exploring AR management in the community. further treatment based on exhaustion from pursuing previous unsuccessful pathways) was synonymous with and often a consequence of delayed diagnosis. Treatment fatigue caused Study design patients to be reluctant to explore further therapies or consult A phenomenological approach was utilized to explore the phenomenon of HCPs. While treatment fatigue is often associated with poor AR. Participants were asked to describe their experiences with AR and adherence, treatment fatigue in AR seems to be less about given “free range” to voice what AR meant to them. adherence and more about disillusionment with multiple failed attempts to control their AR with the treatments available. Participant recruitment Treatment fatigue in AR also expands to the patient’s rigmarole Inclusion criteria: People aged 18 years or older, who identified themselves of health care consultations and investigative procedures, without as having AR and were able to speak English, were eligible for inclusion in AR symptom resolution. To overcome treatment fatigue, patients the study. must be offered support and counseling regarding their AR as has Recruitment: Advertisements for the study were placed on the website been shown for other chronic respiratory disorders such as and Facebook page of the Woolcock Institute of Medical Research, Sydney, asthma. Australia. Letters of invitation were sent to individuals with AR on a Published in partnership with Primary Care Respiratory Society UK npj Primary Care Respiratory Medicine (2018) 3 Tell me about your hay fever: a qualitative investigation B Cvetkovski et al. volunteers’ database at the Woolcock Institute (a database created for the participants gave very detailed accounts of the pharmaceutical regimens purpose of connecting patients with respiratory and sleep conditions, who they use for managing their AR. Codes describing participants pharma- have responded to advertisement fro study participation). People with AR, ceutical management of AR were categorized into themes by BC and SBA, who expressed interest in participating, were required to contact the describing their preferences and the reasons behind them, rather than research team to give consent and make an appointment to be detailed descriptions of the regimen. In addition to the descriptions of interviewed. Snowballing was welcomed and participants were permitted pharmaceutical regimens BC and SBA identified common themes over- to alert others with AR about the study. Participants did not receive any arching many of the transcripts. These themes were chosen to be reported in this manuscript based on what BC, SBA, VK, and KY perceived to be most reward or remuneration for participating in the study. important to the participants during their interviews. Further results not reported here will be reported at later stage in subsequent manuscripts. Data collection ATLAS.ti was used to facilitate the qualitative analysis by providing an Participants were given the option of being interviewed in person at the organizational structure to link the codes, themes and their supporting Woolcock Institute or over the telephone. Interviews were conducted by quotes among the interview transcripts. one researcher (BC). They were audio recorded on a digital audio recording Once analysis was complete, the participants were not given the device, transcribed verbatim and stored electronically. Participants were opportunity to provide feedback on the findings but were able to request informed that their responses were completely de-identified and would a summary of the results. not be traced back to them as individuals in any circumstances. Written This study was approved by the University of Sydney Human Ethics participant consent was obtained prior to the commencement of the Committee. Methods were performed in accordance with COREQ study. regulations and guidelines. Sample size: Phenomenological research requires interviews to be conducted with 5–25 people. Participant recruitment continued until data saturation was achieved with consideration of the phenomenological ACKNOWLEDGEMENTS research sampling frame guidelines. We would like to acknowledge the participants who voluntarily took part in this Semi-structured interview guide: The semi-structured interview guide, research. 32,47,48 based on empirical data and a phenomenological framework covered a range of topics/facets of AR management (including pharma- ceutical management, non-pharmaceutical management, perceived AUTHOR CONTRIBUTIONS impact on quality of life, barriers and challenges associated with AR and B.C., V.K., K.Y., and S.B.A. are responsible for the study design. B.C. and S.B.A. are the recognition of patterns of AR flare-ups) and served to guide the qualitative guarantors for this work. BC conducted the interviews. B.C. and S.B.A. coded the framework of the research. interview transcripts independently then met regularly to discuss their findings. V.K. The interview commenced with open ended questioning in which and K.Y. read a selection of interview transcripts and provided feedback on their participants voiced their initial thoughts or their most pertinent perceived interpretation of the findings provided by B.C. and S.B.A. B.C. drafted the manuscript, issues. Secondary and clarifying questions were asked to encourage further which went through multiple rounds of discussion and feedback with S.B.A. K.Y., and thoughts and experiences to be articulated. V.K. also viewed the manuscript and provided feedback and interpretation. All The specific questions included in the interview guide are displayed in authors have seen and approved the final version of this manuscript. Table 1. If during the interviews, information arose that had not been considered previously, BC would make a note to explore this point in subsequent interviews. ADDITIONAL INFORMATION Competing interests: S.B.A. is a member of the Teva Pharmaceuticals Devices Data analysis International Key Experts Panel, has received research support from Research in Real Qualitative data analysis and representation: In phenomenological data Life, has received lecture fees and payment for developing educational presentations from Teva and Mundipharma; and has received Honoraria from AstraZeneca, analysis, “significant statements” that represent how the participant Boehringer Ingelheim, GlaxoSmithKline, for her contribution to advisory boards/key experienced the phenomenon are identified as “codes”. These codes are international expert forum. V.K. has received honoraria from AstraZeneca, Glax- then categorized into themes that are used to write a description of the oSmithKline and Pfizer. K.Y. has received honoraria for speaking and consulting from experiences of the participants with the phenomenon being researched. AstraZeneca, Boehringer Ingelheim, GlaxoSmithKline, Meda, Mundipharma and A mixed deductive—inductive approach was utilized in the qualitative Pfizer. The author declares no competing financial interests. analysis of the interview transcripts. The mixed analysis approach sought to identify themes arising from the identification of codes in AR literature (deductive) as well as identification of codes from the analytical reading of Publisher's note: Springer Nature remains neutral with regard to jurisdictional claims the data (inductive). The deductive analysis identified the participants’ in published maps and institutional affiliations. responses to themes that were known to be important with regards to AR management in the literature. Such codes included treatment preferences, symptoms, investigations and HCP consultations. 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Patient and physician perspectives on from the copyright holder. To view a copy of this license, visit http://creativecommons. the impact and management of perennial and seasonal allergic rhinitis. Clin. org/licenses/by/4.0/. Otolaryngol. Allied Sci. 25, 551–557 (2000). 32. Bousquet, J. et al. Allergic rhinitis and its impact on asthma (ARIA): achievements © The Author(s) 2018 in 10 years and future needs. J. Allergy Clin. Immunol. 130, 1049–1062 (2012). Published in partnership with Primary Care Respiratory Society UK npj Primary Care Respiratory Medicine (2018) 3 http://www.deepdyve.com/assets/images/DeepDyve-Logo-lg.png npj Primary Care Respiratory Medicine Springer Journals

Tell me about your hay fever: a qualitative investigation of allergic rhinitis management from the perspective of the patient

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Springer Journals
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Medicine & Public Health; Medicine/Public Health, general; Primary Care Medicine; Internal Medicine; Pneumology/Respiratory System; Thoracic Surgery
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10.1038/s41533-018-0071-0
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www.nature.com/npjpcrm ARTICLE OPEN Tell me about your hay fever: a qualitative investigation of allergic rhinitis management from the perspective of the patient 1,2 2,3 2,3 1,2,4 Biljana Cvetkovski , Vicky Kritikos , Kwok Yan and Sinthia Bosnic-Anticevich Allergic rhinitis (AR) is sub-optimally managed in the community and is responsible for a significant health and economic burden. Uncontrolled AR increases the risk of poorly controlled asthma and presents an increased susceptibility to thunderstorm asthma. With the availability of treatments over-the-counter, bypassing the health care professional (HCP), the role of the patient is paramount. Research on the role of the patient in AR management in the current environment is limited. This study aims to explore the patient perspective of AR management and understand why it is sub-optimally managed in the community. Patient perspectives of AR management were explored utilizing a qualitative, phenomenological approach. Adults with AR were included in the study and interviewed. Transcripts were analyzed for recurrent themes and emergent concepts. Forty-seven participants with AR were interviewed about their experiences. Patient reports of delayed diagnosis, treatment fatigue and confidence in the ability to manage their AR themselves, heavily influenced their management preferences. Patients also described barriers associated with AR management including financial expense as well as being mistaken for having an infectious disease. Patients described examples of the impact on their quality of life caused by their AR, yet they strongly believed they could manage it themselves. This belief that AR is a condition that should be entirely self-managed, contributes to its burden. It amplifies patients’ separation from HCPs and having access to guidelines aimed at optimizing their AR control. npj Primary Care Respiratory Medicine (2018) 28:3 ; doi:10.1038/s41533-018-0071-0 INTRODUCTION and the subsequent medication self-management practices of 21–25 individuals with AR. Of particular interest is the latter. In 2014-2015, allergic rhinitis (AR) affected 4.5 million i.e., 19% of It is well recognized that patient self-management plays a major Australians, becoming the most prevalent respiratory condition in 26–28 role in the successful management of chronic illnesses. While the mid-teenage years; peaking in working aged adults. Its 2–7 this has been explored in the related field of asthma, in which prevalence and poor control is of worldwide concern. The patient medication self-management has been shown to play a burden of this highly prevalent respiratory condition, while often significant role in overall treatment success; our understanding trivialized, is staggering, with uncontrolled AR impacting on the of medication self management in AR is limited. While large-scale quality of life (QOL), work productivity, school performance, social 8–10 studies in Europe and the Americas have provided us with interactions driving ability and sleep of those who suffer from detailed information about patient medication preferences along the condition. with the co-existence of bothersome symptoms and loss of In Australia, the burden of AR has recently been highlighted as a 3,22–25,30,31 productivity, they fail to explain why patients chose to 11,12 consequence of a fatal “Thunderstorm Asthma” event. During self-medicate in the way they do, despite often living with sub- this event, an unprecedented, unexpected demand was made on optimally managed AR. health care facilities by people in respiratory distress, 90% of The aim of this study is to gain an in-depth understanding of 13,14 which had a history of AR. Questions arose about how such a the experiences, beliefs and reasons behind the medication self- fatal event could have been avoided, given the availability of management practices of patients with AR. comprehensive, evidence-based guidelines both for the treatment 15–19 of AR and asthma. AR management guidelines present a step-wise strategy, which RESULTS couple allergen (trigger) avoidance, medication management Fifty-seven people contacted the research team expressing (including over-the-counter [OTC] and prescription medicines), interest in participating in the study. Of these, forty-seven people and immunotherapy in specific, severe cases of AR. However, with AR from New South Wales, Australia, were interviewed for despite this multidimensional approach, the reality is that allergen this study, with the remainder not being able to be contacted by avoidance is not effective for most patients and immunotherapy is the research team following initial expression of interest. The 47 limited to only a very select group of patients, thereby the participants, were aged from 18 to 86 years of age with a median mainstay treatment of AR relies on medication management. age of 39 and 28 were female. Eight participants were from rural Therefore, in exploring the burden of AR, attention must be drawn communities in NSW and 39 from the Sydney metropolitan area. to the medication management of AR by health care providers Interview duration ranged from 9 to 67 min with an average 1 2 3 4 University of Sydney, Sydney, Australia; Woolcock Institute, University of Sydney, Sydney, Australia; Royal Prince Alfred Hospital, Sydney, Australia and Sydney Local Health District, Sydney, Australia Correspondence: Biljana Cvetkovski (biljana.cvetkovski@sydney.edu.au) Received: 20 August 2017 Revised: 9 November 2017 Accepted: 2 January 2018 Published in partnership with Primary Care Respiratory Society UK Tell me about your hay fever: a qualitative investigation B Cvetkovski et al. Table 1. Semi-structured interview guide Primary question Secondary questions Clarification Tell me about your experiences with allergic rhinitis/hay How long have you been experiencing these What times of day/year do you fever (symptoms, challenges, satisfaction) symptoms? experience worsening symptoms? What treatments do you currently or have What do you find makes them better or previously tried for your symptoms? worse? What prompted you to try these treatments? How would you describe the impact of these symptoms on your daily activities? duration of 23 min. Four interviews were conducted face-to-face at My parents did everything under the sun. They’ve gone the Woolcock Institute and the remainder were conducted over everywhere. P31 the telephone. Participants who chose to participate over the As a result of this, they reported a sense of treatment fatigue, telephone were sent participant information and consent forms i.e., a sense of having explored all available options with regards to via email or post based on their preference. The majority of treating their AR and having exhausted any desire to pursue recruited participants were on the Woolcock’s volunteers database further investigations or treatment options. They had concluded and had responded to the letters of invitation or had heard of the that there was nothing available to eliminate their symptoms. study through snowballing. They had also developed skepticism about products that claimed Data saturation was obtained following the forty-second to be “new” and would eliminate AR. Participants no longer interview after which no new information was described by the believed that there were any options that they had not explored subsequent participants. However all forty-seven volunteers were and that all new products were similar to old products, just in new interviewed to ensure saturation. packaging or marketed differently. They felt they could no longer Seven themes were identified that best represented the generate energy to explore “new” treatments as they assumed patient’s perspective of AR management. The semi-structured they would be disappointed with the efficacy as they had been in interview guide appears in Table 1. This already appears in the the past with other products with similar claims. Consequently, methods Data Collection Section. these participants no longer enquired about treatments with HCPs nor did they do their own research about AR. They stated that the only thing that sparked their interest to reconsider their AR Delayed diagnosis and misdiagnosis management were media reports about a “breakthrough” in AR A large proportion of participants reported a challenge associated treatment. with getting a correct diagnosis. In most of these cases, they had experienced symptoms from childhood and reported symptoms I keep my ears open for breakthroughs, but there aren’t any. P1 for many years. They were assumed to have a cold or flu and expressed relief at the point when it had been diagnosed as AR. A huge burden being lifted as a result of knowing what their There’s just nothing I can do to relieve it and the other thing symptoms were caused by, rather than relief of symptoms. They too is I’ve given up buying drugs over the counter because I reported seeing multiple HCPs before a suitable treatment was know they don’t work. P10 found. Why do I always have a cold? P13 Confidence in their ability to manage AR themselves Participants reported confidence in their ability to manage their There was also a subset of participants who had identified as AR independently. After years of trying different medications and having developed AR in adulthood. They reported a delay in consulting HCPs, patients felt that they had learnt enough and diagnosis, they did not expect to develop AR later in life, often tried enough treatments to determine for themselves what was they had never experienced any symptoms earlier in life and best. This was especially the case when considering symptom although less common, some participants reported having being relief, identifying risk factors and preferences with regards to treated for asthma and only later being diagnosed as having AR mode of treatment delivery. With regards to symptom relief, the instead. participants expressed a high tolerance of their symptoms and were satisfied with a small reduction in symptom severity. I’m 52 and I didn’t get asthma until I was in my 40 s and then a few years ago I had what I felt was a cough that just kept going As soon as I take them all the symptoms dissipate. They won’t on and on. The doctor said no, it was hay fever. So it was certainly go away. But they certainly dissipate. P30 allergic rhinitis. P10 So Zyrtec, Beconase, the sprays. Like the nasal sprays and the tablets, whatever brand really. Claratyne, I’ve tried all of them. Treatment fatigue P57 The delay in diagnosis of AR, especially in childhood often meant participants had been exposed to a gamut of tests and treatments The chronic nature of AR allowed them to recognize patterns of prior to and following their diagnosis of AR. They described a symptoms, identify triggers and develop avoidance strategies. childhood filled with many investigations, medications, doctor’s Patients felt that HCP appointments were a significant impinge- appointments and alternative treatment options. ment on their own time and that their own efforts in managing npj Primary Care Respiratory Medicine (2018) 3 Published in partnership with Primary Care Respiratory Society UK 1234567890():,; Tell me about your hay fever: a qualitative investigation B Cvetkovski et al. their AR were a more efficient use of their time. Using their own this meant a significant reduction in their symptoms and skills to manage their AR let them accommodate their treatment symptoms thereafter were manageable with the occasional use preferences best, both with respect to method of delivery and of oral antihistamines. For others, it cemented the ideology that expectation regarding symptom relief. Some participants pre- nothing would cure their AR and these participants were not pared for a predicted worsening of symptoms due to an motivated to try any further treatments. upcoming exposure to triggers by taking antihistamines pre- ventatively, based on their own experimentation and belief for I wait for the symptoms to occur because I’m very anti-drug and the symptoms are so severe to the point where I actually what is best for them. can’t work, because it is like a head cold. P30 I usually get itchy eyes when the pollen count is really high and also when it’s dusty and I sneeze a lot as well. P18 I have to take something otherwise I am a mess. Only when it gets really really bad. A couple of times a week. P56 That is more of a preventative measure - I stock up on it 2 weeks in advance - which minimises the effect of the I’d use them just while there is a lot of flowers and dust in the symptoms. Heading up to spring and so the body, I believe, air, the change of season in springtime and that sort of thing. If builds up a sort of immunisation or builds up a resistance to it started coming on then I’d use it for a week or something the hay fever. It allows me to deal with it on a - in a much and see how I went without it. P50 better fashion. P31 The final group, which medicated to be symptom free, used more medicines more frequently than the other two groups. AR Management preferences presented a significant burden to them and their quality of life There were three predominant sentiments that were reported by that they were willing to take regular medicines preventatively to participants when describing their preferences for managing their try and control their symptoms. This cohort of participants AR, all of which related to medication use and selection. Firstly, a reported an exploration of alternate medicines in order to relieve preference not to medicate at all with the exception of a nasal the symptoms of AR. They explored alternate therapies in saline wash or mist. Secondly, those who reluctantly medicate, circumstances where traditional medicines had not met their when they felt the symptoms were otherwise intolerable. Thirdly, needs. These participants were most likely to have undergone those who want to take any form of treatment in order to be immunotherapy. symptom free. The first group that had a preference not to medicate, [What prompted you to see a naturopath in the first place?] represented people who did not believe that medication worked and those that had beliefs against medication. A subset of participants felt that they had tried all available AR treatments and Just desperation I think. P21 nothing cured or completely eliminated their symptoms, therefore taking symptom-relieving medicines was a waste of time and an unnecessary risk of experiencing adverse effects. Other partici- I’d have to rely on them daily. To be able to cope, yeah…to pants who wished not to medicate, said that they ideologically work I’d have to rely on them - even the eye sprays - to get me preferred not to use medicines for their AR. through the day because it gets really bad, really irritating. They [symptoms] just reduce for a few hours. P39 So I don’t really like sticking chemicals up my nose. P25 An individuals’ approach/attitude to taking AR medicine was not influenced by the severity of symptoms or the impact on I want someone to tell me that just having a carrot a day or quality of life. Regardless of the participant’s severity or something gross like a zucchini will fix everything. I’ll be like medication preferences, there was an overwhelming preference ‘ok, I’ll do it if I really have to’. P17 for use of oral medicines due to ease of administration and use, portability, palatability, perceived effectiveness and onset of action (compared with INCS). Participants reported that when I don’t particularly like taking medication. P19 they were using a medicine, which they perceived as adequately relieving their symptoms, they would not explore alternative The second group medicated when they perceived it necessary, options. There was however a belief among the majority of sharing some of the sentiments of participants who preferred not participants that they would develop a tolerance to oral to medicate at all. They too felt that no treatment completely antihistamine medicines if they repeatedly used the same eliminated their symptoms, hence did not sense a purpose in product. They believed that this could be avoided if they using regular medicines and experiencing the expense and occasionally were to switch brands. commitment associated with it. They preferred not to have to use any medicines, but in some circumstances perceived their I alternated between them, but I found the Claratyne was the symptoms to be intolerable and unacceptably impeding on their most effective, so I ended up just buying Claratyne from then productivity or quality of life. In such circumstances, this cohort of on. P56 participants had a preference for using non-sedating oral antihistamines for their ease of use, availability, onset of action and perceived effectiveness. The majority of participants had at No it[non-sedating antihistamine] seems to be working well, some point used an intranasal corticosteroid [INCS], however very cost effective, I don’t get any side effects from it, but yeah. P44 few were still using it. The main reason for discontinuation was the perception that it did not work, even though they had used it for weeks or months at a time. Some participants reported they had Because [antihistamines] are smaller and I can swallow them undergone immunotherapy at some stage in their lives. For some, without water. P13 Published in partnership with Primary Care Respiratory Society UK npj Primary Care Respiratory Medicine (2018) 3 Tell me about your hay fever: a qualitative investigation B Cvetkovski et al. disease. For some, this meant that they deliberately did not I didn’t find them [INCS] that effective. I still use them if I feel discuss their AR with anyone and internalized their management like I have to. entirely. They felt that discussing it with others would not achieve anything except bring them more unwarranted attention. But I just don’t find them that effective. So I don’t really rely on The whole idea is, in front of people I want to just come across them to do as unaffected. P47 Participants reported that the symptoms of AR brought what they need to do. P57 unwarranted attention, particularly sneezing and nasal conges- Some, participants had consulted an ear, nose, and throat tion. They felt that there is a stigma associated with sneezing and surgeon. Where additional nasal issues were identified and ear- nasal congestion due to others misinterpreting the symptoms as marked as potentially benefitting from surgical intervention (e.g., belonging to a contagious cold or flu. Participants reported having deviated septum), there were mixed responses in the uptake. to constantly explain to people that they have AR and are not There was almost an equal distribution between people who were infectious and do not need to be isolated or kept away from willing to explore surgery as an option versus those who preferred school or the workplace. The symptoms of AR also caused them to to avoid it. Some thought a one-off intervention was worth feel embarrassed among their colleagues and peers. considering where others felt that the risk and significance of There’s a big stigma and focus on people sneezing…so I often surgery substantially outweighed any potential benefit. Some say to people I don’t have a cold, it’s hay fever. P14 participants reported a significant improvement in the ability to breathe after they had surgery, only then realizing that they had accepted a poor standard of breathing in the past. It’s embarrassing you know, having these symptoms. P14 Financial expense Participants reported that in some circumstances their choices People think I’ve got a cold. PH regarding AR management were based on cost. Cost arose as an issue when describing treatment selections, visits to a doctor and procedures to formally diagnose AR. The perception of financial We’ve got a bridge club and they always say, ‘if you’ve got a burden of AR treatments was evaluated based on the person’s cold, stay home, we don’t want you here’.I’ve had to tell perception of its monetary value versus perceived effectiveness. In people, ‘well it isn’t a cold that I have. I’ve just got it all the some instances further investigation, such as a skin prick test, was time’.P7 deemed expensive and were not perceived as necessary. Participants felt they had identified their triggers through observation of pattern and exposure history. Similarly, the Impact on wellbeing financial expense of medication was questioned based on how A theme that repeatedly displayed variation among participants effective it was perceived to be and the difference it made to the was the perception of the impact AR on their life. Responses person’s quality of life. ranged from AR being regarded as an “inconvenience” to something that if persistent, can make them feel depressed. [Preference for medication], yeah by price basically. P34 Participants who felt AR was a nuisance, regardless of its severity, did so because they compared it to having a life-threatening condition. Ultimately, they felt that AR did not warrant more A lot of it depends on how expensive they are as well. P41 attention than they had given it because it would not end their life. That’s always been a goal of mine to be able to have the pre- You get not depressed but kind of like depressed I suppose the test to find out exactly what the triggers are. But I pretty much word is. It’s very debilitating. You can’t believe it but it’s true. know what they are-know not specifically, but I know what P33 they are. Pollens and dust pretty much. It doesn’t really bother me, so I haven’t done it and it’s expensive. P50 It is an annoyance, but it’s not a lethal, life threatening disease or anything. It’s not life crippling. It’s just inconvenient, really. It worked quite good[INCS] but at the time I didn’t have the P56 money to buy it because it was so expensive. P25 No, no that bad [not symptoms everyday]. I’d neck myself if it I had to use it-to do one spray of the steroid one and another was every day. P2 spray of the other one otherwise it wouldn’t work. Until eventually the steroid did take over but it didn’t happen Many identified the impact of AR on daily activities extended straight away. It was really annoying because I’d spent all this beyond themselves and their immediate family. money on the spray but I had to use the other one. P25 I have a young family now so sleep is a little more precious to me [than it used to be, hence have sought referral to a Unwanted attention specialist]. P8 There was a strong sentiment among the participants that they did not want to be labeled as having an illness. They referred to it People with AR were more likely to notice the impact of AR on as nuisance or an irritation, rather than a chronic respiratory their life when it interfered with their workplace productivity. npj Primary Care Respiratory Medicine (2018) 3 Published in partnership with Primary Care Respiratory Society UK Tell me about your hay fever: a qualitative investigation B Cvetkovski et al. Treatment options were explored and determined based on how Patients believe that AR is a condition that they should be self- AR affected their ability to perform at work. Participants became managing. This is influenced by the availability of medicines over tolerant to a certain impact on their quality of life brought upon the counter (OTC). As patients try different medicines, they by AR. This tolerance would be challenged and further treatment develop confidence in their ability to do so, continuing the cycle would be sought when the impact on quality of life was of self-management and treatment trials. Being able to choose heightened, sometimes due to factors unrelated to AR, (e.g., poor their medicines OTC facilitates them in accessing their preferred sleep quality associated with AR was no longer tolerated when oral, quick relief, occasional-use medicine and avoid the disliked 23,38 sleep quality was also challenged with the arrival of a newborn intranasal sprays. The preference for quick relief occasional- baby). use medicine is evidence of their perception of AR as an acute condition, rather than a chronic disease. I’m tired and it’s hard to concentrate and feel unwell. P14 This research highlights that it is not just the availability of OTC medicines that drives the patient to self-manage their AR. These patients reported that they know what works best for them and To go to work, I’d have to rely on them [antihistamines],even suggested that their HCPs have not entirely understood their goals the eye sprays, to get me through the day because it gets really for their AR. Understanding of patients’ treatment aims and goals 39–41 bad, really irritating. P39 has been shown to improve their AR management and should be taken into account when developing their management plan. In considering these findings it is important to consider possible I can’t work, now I’m allergic to rats… I couldn’t continue with solutions. Possible solutions should include simple pathways for research in that area. A career working with animals would recognition and diagnosis of AR in primary care, and the have been out for sure. P14 development of tools and support mechanism for patients through therapeutic partnerships with HCPs. Of critical impor- tance, is that tools available to patients should be dynamic, accommodate for changing AR severities and provide guidance in DISCUSSION instances of a “flare up” as seen in written asthma action plans. This research provides important fresh insights to the reasons why The MACVIA-Allergy Diary App is able to provide the patient people with AR sub-optimally manage their condition and goes to with some guidance on self-managing their AR but further explain what has led to patients choosing to carry the burden of research needs to be conducted to investigate how HCPs can best AR management themselves. This study of patient’s perspective collaborate with patients to optimize its use. has identified that patient’s choice to self-manage their AR is This study was potentially limited by the sample, which is likely linked to sub-optimal experiences with HCPs and confidence in to under-represent patients with mild AR. While a majority of their own abilities to treat their AR with OTC medicines. AR participants reported being diagnosed with AR, the inability to guidelines are developed for use by HCPs and by self-managing confirm the patient’s diagnosis of AR is a potential limitation. It their AR in isolation, patients are moving further away from the should be noted however that the demographics of the study reach of these guidelines and into unguided territory, compound- population were consistent with that reported previously for the ing the burden it has on the community. Asia-Pacific region. In conducting this research, one striking point was noted; when In conclusion, our findings strongly demonstrate that the patients consider the management of their AR, there is a patient’s experience with AR is unique, varied and very much a dominant focus on medication management. While self- condition in which patients self-manage with medications that are management is multifaceted and includes elements of trigger easily and abundantly available to them. AR management is avoidance and monitoring in addition to medication manage- influenced by patients’ experiences prior to receiving a diagnosis ment, the patient’s perspective of management and their role in it following which their knowledge and beliefs about AR and its is focused on pharmaceuticals and the options they have. There treatments are formed. These results highlight the critical need to are several aspects that impact on this, as highlighted in the increase the dialog between HCPs and their patients regarding AR, following discussion. improve the understanding of the significance of AR and optimize The delayed diagnosis/misdiagnosis of AR plays a formative role its management and for HCPs to acknowledge patients’ expecta- in the patient’s sub-optimal management. Disenchantment with tions and beliefs with regards to treatment. HCPs must engage HCPs’ ability to identify their problem steers them on the path of patients, embrace AR self-management and work collaboratively self-management, in a sense, towards a “self-help” approach. This with patients to optimize their AR management. goes to set up a vicious cycle, and increased burden of AR, as delayed diagnosis results in a delay in seeking medical advice until symptoms are intolerable, a finding similar to that experienced METHODS by patients with chronic rhinosinusitus. This study took the form of a qualitative exploration of patients’ Treatment fatigue (defined as a decreased desire to explore perspectives of AR management and was conducted as a part of a larger study exploring AR management in the community. further treatment based on exhaustion from pursuing previous unsuccessful pathways) was synonymous with and often a consequence of delayed diagnosis. Treatment fatigue caused Study design patients to be reluctant to explore further therapies or consult A phenomenological approach was utilized to explore the phenomenon of HCPs. While treatment fatigue is often associated with poor AR. Participants were asked to describe their experiences with AR and adherence, treatment fatigue in AR seems to be less about given “free range” to voice what AR meant to them. adherence and more about disillusionment with multiple failed attempts to control their AR with the treatments available. Participant recruitment Treatment fatigue in AR also expands to the patient’s rigmarole Inclusion criteria: People aged 18 years or older, who identified themselves of health care consultations and investigative procedures, without as having AR and were able to speak English, were eligible for inclusion in AR symptom resolution. To overcome treatment fatigue, patients the study. must be offered support and counseling regarding their AR as has Recruitment: Advertisements for the study were placed on the website been shown for other chronic respiratory disorders such as and Facebook page of the Woolcock Institute of Medical Research, Sydney, asthma. Australia. Letters of invitation were sent to individuals with AR on a Published in partnership with Primary Care Respiratory Society UK npj Primary Care Respiratory Medicine (2018) 3 Tell me about your hay fever: a qualitative investigation B Cvetkovski et al. volunteers’ database at the Woolcock Institute (a database created for the participants gave very detailed accounts of the pharmaceutical regimens purpose of connecting patients with respiratory and sleep conditions, who they use for managing their AR. Codes describing participants pharma- have responded to advertisement fro study participation). People with AR, ceutical management of AR were categorized into themes by BC and SBA, who expressed interest in participating, were required to contact the describing their preferences and the reasons behind them, rather than research team to give consent and make an appointment to be detailed descriptions of the regimen. In addition to the descriptions of interviewed. Snowballing was welcomed and participants were permitted pharmaceutical regimens BC and SBA identified common themes over- to alert others with AR about the study. Participants did not receive any arching many of the transcripts. These themes were chosen to be reported in this manuscript based on what BC, SBA, VK, and KY perceived to be most reward or remuneration for participating in the study. important to the participants during their interviews. Further results not reported here will be reported at later stage in subsequent manuscripts. Data collection ATLAS.ti was used to facilitate the qualitative analysis by providing an Participants were given the option of being interviewed in person at the organizational structure to link the codes, themes and their supporting Woolcock Institute or over the telephone. Interviews were conducted by quotes among the interview transcripts. one researcher (BC). They were audio recorded on a digital audio recording Once analysis was complete, the participants were not given the device, transcribed verbatim and stored electronically. Participants were opportunity to provide feedback on the findings but were able to request informed that their responses were completely de-identified and would a summary of the results. not be traced back to them as individuals in any circumstances. Written This study was approved by the University of Sydney Human Ethics participant consent was obtained prior to the commencement of the Committee. Methods were performed in accordance with COREQ study. regulations and guidelines. Sample size: Phenomenological research requires interviews to be conducted with 5–25 people. Participant recruitment continued until data saturation was achieved with consideration of the phenomenological ACKNOWLEDGEMENTS research sampling frame guidelines. We would like to acknowledge the participants who voluntarily took part in this Semi-structured interview guide: The semi-structured interview guide, research. 32,47,48 based on empirical data and a phenomenological framework covered a range of topics/facets of AR management (including pharma- ceutical management, non-pharmaceutical management, perceived AUTHOR CONTRIBUTIONS impact on quality of life, barriers and challenges associated with AR and B.C., V.K., K.Y., and S.B.A. are responsible for the study design. B.C. and S.B.A. are the recognition of patterns of AR flare-ups) and served to guide the qualitative guarantors for this work. BC conducted the interviews. B.C. and S.B.A. coded the framework of the research. interview transcripts independently then met regularly to discuss their findings. V.K. The interview commenced with open ended questioning in which and K.Y. read a selection of interview transcripts and provided feedback on their participants voiced their initial thoughts or their most pertinent perceived interpretation of the findings provided by B.C. and S.B.A. B.C. drafted the manuscript, issues. Secondary and clarifying questions were asked to encourage further which went through multiple rounds of discussion and feedback with S.B.A. K.Y., and thoughts and experiences to be articulated. V.K. also viewed the manuscript and provided feedback and interpretation. All The specific questions included in the interview guide are displayed in authors have seen and approved the final version of this manuscript. Table 1. If during the interviews, information arose that had not been considered previously, BC would make a note to explore this point in subsequent interviews. ADDITIONAL INFORMATION Competing interests: S.B.A. is a member of the Teva Pharmaceuticals Devices Data analysis International Key Experts Panel, has received research support from Research in Real Qualitative data analysis and representation: In phenomenological data Life, has received lecture fees and payment for developing educational presentations from Teva and Mundipharma; and has received Honoraria from AstraZeneca, analysis, “significant statements” that represent how the participant Boehringer Ingelheim, GlaxoSmithKline, for her contribution to advisory boards/key experienced the phenomenon are identified as “codes”. These codes are international expert forum. V.K. has received honoraria from AstraZeneca, Glax- then categorized into themes that are used to write a description of the oSmithKline and Pfizer. K.Y. has received honoraria for speaking and consulting from experiences of the participants with the phenomenon being researched. AstraZeneca, Boehringer Ingelheim, GlaxoSmithKline, Meda, Mundipharma and A mixed deductive—inductive approach was utilized in the qualitative Pfizer. The author declares no competing financial interests. analysis of the interview transcripts. The mixed analysis approach sought to identify themes arising from the identification of codes in AR literature (deductive) as well as identification of codes from the analytical reading of Publisher's note: Springer Nature remains neutral with regard to jurisdictional claims the data (inductive). The deductive analysis identified the participants’ in published maps and institutional affiliations. responses to themes that were known to be important with regards to AR management in the literature. Such codes included treatment preferences, symptoms, investigations and HCP consultations. 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Patient and physician perspectives on from the copyright holder. To view a copy of this license, visit http://creativecommons. the impact and management of perennial and seasonal allergic rhinitis. Clin. org/licenses/by/4.0/. Otolaryngol. Allied Sci. 25, 551–557 (2000). 32. Bousquet, J. et al. Allergic rhinitis and its impact on asthma (ARIA): achievements © The Author(s) 2018 in 10 years and future needs. J. Allergy Clin. Immunol. 130, 1049–1062 (2012). Published in partnership with Primary Care Respiratory Society UK npj Primary Care Respiratory Medicine (2018) 3

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