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How patients with gout become engaged in disease management: a constructivist grounded theory study Howren, Alyssa; Cox, Susan M; Shojania, Kam; Rai, Sharan K; Choi, Hyon K; De Vera, Mary A Jun 1, 2018

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RESEARCH ARTICLE Open AccessHow patients with gout become engagedin disease management: a constructivistgrounded theory studyAlyssa Howren1,2,3, Susan M. Cox4, Kam Shojania2,5, Sharan K. Rai2,6,7, Hyon K. Choi2,8 and Mary A. De Vera1,2,3*AbstractBackground: Prior qualitative research on gout has focused primarily on barriers to disease management. Ourobjective was to use patients’ perspectives to construct an explanatory framework to understand how patientsbecome engaged in the management of their gout.Methods: We recruited a sample of individuals with gout who were participating in a proof-of-concept study of aneHealth-supported collaborative care model for gout involving rheumatology, pharmacy, and dietetics. Semistructuredinterviews were used. We analyzed transcripts using principles of constructivist grounded theory involving initialcoding, focused coding and categorizing, and theoretical coding.Results: Twelve participants with gout (ten males, two females; mean age, 66.5 ± 13.3 years) were interviewed. Theanalysis resulted in the construction of three themes as well as a framework describing the dynamically linked themeson (1) processing the diagnosis and management of gout, (2) supporting management of gout, and (3) interferingwith management of gout. In this framework, patients with gout transition between each theme in the process ofbecoming engaged in the management of their gout and may represent potential opportunities for healthcareintervention.Conclusions: Findings derived from this study show that becoming engaged in gout management is a dynamicprocess whereby patients with gout experience factors that interfere with gout management, process their disease andits management, and develop the practical and perceptual skills necessary to manage their gout. By understanding thisprocess, healthcare providers can identify points to adapt care delivery and thereby improve health outcomes.Keywords: Gout, Qualitative research, Grounded theory, Disease managementBackgroundDespite the availability of effective medication therapy inthe form of urate-lowering therapy (ULT), studies haveconsistently reported suboptimal outcomes, includingrepeated flares [1], increased cardiovascular mortality[2], and excess all-cause mortality [2, 3], for individualswith gout, the most common inflammatory arthritis inmen [4]. Factors contributing to suboptimal patientoutcomes include poor adherence to ULT, with ratesranging from 10% to 46% [5], and insufficient quality ofcare [6–8]. As such, efforts are presently focused onoptimizing care delivery and improving outcomes for pa-tients with gout [9, 10], including models of care deliveryinvolving allied healthcare providers such as rheumatol-ogy nurses [11] and pharmacists [12, 13].Aside from novel models of care, also important toimproving the quality of care for gout is an understand-ing of the patient’s perspective, particularly throughapplying qualitative inquiry because this has the capacityto elucidate the discordance between evidence-basedpractice and the reality of managing gout [14]. Qualita-tive research in gout has been published in the UnitedStates, the United Kingdom, Australia, New Zealand,and the Netherlands, with a recent thematic synthesis byour group showing that studies have primarily reportedbarriers to optimal management of gout from patients’* Correspondence: mdevera@mail.ubc.ca1Faculty of Pharmaceutical Sciences, University of British Columbia, 2405Wesbrook Mall, Vancouver, BC V6T 1Z3, Canada2Arthritis Research Canada, Richmond, BC, CanadaFull list of author information is available at the end of the article© The Author(s). 2018 Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, andreproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link tothe Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver(http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.Howren et al. Arthritis Research & Therapy  (2018) 20:110 https://doi.org/10.1186/s13075-018-1608-xas well as providers’ perspectives, primarily situated withintraditional care delivery models [15]. Although a 2014study evaluated factors that influence ULT adherence [16]and a 2017 study explored solutions for self-managementamong African American male veterans [17], the findingsare limited in scope with respect to a focus on medicationuse [16] and a distinct patient sample [17]. Current know-ledge gaps include how patients with gout can best besupported in the context of receiving care. As such, toinform optimal care delivery through a patient-centeredlens, we aimed to explore individual experiences with goutto understand how they become engaged in the manage-ment of gout in the context of receiving care.MethodsStudy designWe conducted a qualitative study nested within theVirtual Gout Study, a longitudinal proof-of-conceptstudy evaluating an eHealth-supported collaborative caremodel involving rheumatology, pharmacy, and dieteticsfor gout in British Columbia, Canada [18]. In brief, inthis novel decentralized model, eight communityrheumatologists’ electronic medical records (EMR) forconsented participants with gout were shared with astudy pharmacist and study dietitian who provided con-sultations, respectively, via telephone. As such, thisshared EMR supported remote communication and col-laboration among health professionals. The descriptivequalitative study was informed by constructivistgrounded theory, an approach that is well suited to thestudy of social processes and gaining an in-depth under-standing of participants’ lived experiences [19, 20].Participant recruitmentWe invited individuals from the Virtual Gout Study,which included patients with confirmed gout who wereseen in one of four participating rheumatology practicesand had at least one flare in the past year and serum uricacid (SUA) level > 360 μmol/L in the past 2 months (attime of recruitment) to participate in our qualitativestudy. According to the Virtual Gout Study protocol,participants (1) were seen by their rheumatologists onan as-needed basis; (2) had monthly (or as-needed) tele-phone consults with the study pharmacist, includingmedication reviews (e.g., discussion of ULT dosage,medication adherence, discontinuation of unnecessarymedications), and discussion of laboratory test results;and (3) one telephone consult with the study dietitianregarding dietary recommendations for gout. To explorea range of experiences, we purposefully sampled inter-view participants according to SUA level and self-reported adherence using the five-item version of theCompliance Questionnaire for Rheumatology (CQR5)[21–24], as measured in the Virtual Gout Study.We applied the criteria of completion of a minimum of6 months of follow-up in the Virtual Gout Study with atleast one pharmacist and one dietitian consult, able toprovide informed consent, having access to a phone, andable to comprehend and speak English.Data gatheringSemistructured interviews, using adaptable probes andprompts, were conducted with participants by a singleauthor (AH) over the telephone. Each interview wasstarted by briefing the participant on the subject matterand purpose and situating the participant as the expertearly in the interview [25, 26]. A topic guide with open-ended questions was developed and revised by studyauthors (AH, SMC, SKR, MADV), and the interviewwas focused on exploring participants’ experiences withgout before and during the Virtual Gout Study, manage-ment of gout, perceptions of disease activity, and beliefsand behaviors surrounding gout medications. Interviewswere recorded using a WS-853 digital voice recorder(Olympus, Center Valley, PA, USA). Professionaltranscription service providers transcribed each audio-recorded interview.AnalysisWe followed three main steps of the coding process ofconstructivist grounded theory: initial coding, focusedcoding and categorizing, and theoretical coding [19]. Forthe initial coding phase, we conducted line-by-line coding.Focused coding narrowed the scope of the qualitative ana-lysis by identifying initial codes that held analytical signifi-cance or were repetitive. Last, theoretical coding was donewith the aim of interpreting relationships between con-structed categories [19]. On the basis of emerging analysisas well as prior knowledge that poor ULT adherence [5]and management [6–8] underlie suboptimal health out-comes in gout, we explored previous analytic constructsthat pertain to treatment adherence to inform theemerging theoretical codes [27]. Analytical techniquessuch as the constant comparative method and memo-writing were applied throughout [19, 28]. Data gatheringand analysis were carried out in an iterative process suchthat participants were interviewed until saturation wasachieved. This is the point where no new insights into theconstructed categories and themes emerged [29]. We usedNVivo 11 (QSR International, Doncaster, Australia) for allanalyses. This study was reviewed and approved by theUniversity of British Columbia Behavioural ResearchEthics Board (H16–02061).ResultsTwelve participants with gout (ten males, two females;mean age, 66.5 ± 13.3 years) were interviewed over thetelephone. Mean SUA as recorded in the Virtual GoutHowren et al. Arthritis Research & Therapy  (2018) 20:110 Page 2 of 8Study nearest the time of interview was 387 μmol/L (±110 μmol/L). Six participants had SUA > 360 μmol/Land/or were classified as nonadherent by the CQR5. Allparticipants were prescribed ULT at the time of theinterview. The average duration of the interviews was33 minutes. The analysis resulted in the construction ofthree themes: (1) processing the diagnosis and manage-ment of gout, (2) supporting management of gout, and(3) interfering with management of gout. In addition, weused an explanatory framework to illustrate the processof becoming engaged in gout management.ThemesTheme 1: processing the diagnosis and management ofgoutThe first theme, processing the diagnosis and manage-ment of gout, which encompassed how participantslearn to navigate their diagnosis, comprised conceptualcategories of: (1) adapting to gout, (2) searching forreason, and (3) testing the waters (Table 1). Adapting togout describes how participants found ways to modifytheir lifestyles, including practical changes, acclimatizingto the pain, and modifying diet. Practical changes in-cluded participants adjusting their activity levels on thebasis of disease activity and making accommodations (e.g., footwear, aids/devices), whereas dietary modificationsincluded identifying and avoiding personal triggers suchas acidic foods, alcohol, and seafood. Searching forreason describes the process shared by some participantsin which they sought to find reasons for having gout,such as questioning the relationship between diet and ahigh SUA or undergoing the emotional experience ofquestioning why they have gout and why they have toendure such pain. Last, testing the waters is a process inwhich participants mentioned instances when theytrialed their diet or modified their medications. Thisself-experimentation often occurred during a periodwhen participants reached a level of comfort with goutmanagement or an asymptomatic period. For one par-ticipant, concern about side effects of gout medicationspreceded modification to medications.Theme 2: supporting management of goutThe second theme of supporting management of goutcomprised six conceptual categories: (1) being organized,(2) identifying motivation, (3) taking control, (4) seeing adifference, (5) resonating importance of gout medica-tions, and (6) developing acceptance. A common sup-porter of managing gout that participants identified wasa sense of being organized, whether an inherent oracquired behavior. Some participants were taking severalmedications for other conditions, and therefore anemphasis was placed on the necessity of taking andscheduling their treatments. Many participants discussedhow taking their gout medications had become a routineintegrated into their daily schedule or was paired withan already established daily activity.The category identifying motivation describes the rea-son why participants are compelled to take their goutmedications. Most participants stated that they contin-ued to take their medications to avoid the immense painexperienced during gout flares. As such, it seems thatmost participants had made the connection between ad-hering to daily ULT and the prevention of future painfrom gout. A few participants mentioned the need to getback to day-to-day activities to improve their health as asignificant motivator as well as to avoid visits to thehospital or their physician’s office.Taking control refers to participants having an activerole in managing their gout. Participants relayed a senseof personal responsibility such as being proactive andtaking initiative, acknowledging the importance of know-ing one’s own body (e.g., triggers of gout flares), andfeeling that “my health is my concern” (participant 5,male). Also mentioned by participants was beingproactive in terms of searching for information aboutgout online and requesting an appointment with a spe-cialist. In addition, some participants mentioned havinga personal plan to deal with future gout flares, includingknowing when to take colchicine, which appeared to es-tablish confidence in managing their disease.The category seeing a difference refers to momentsduring treatment in which participants realized the rolethat medications and diet play in modifying their goutsymptoms, such as when stopping or initiating goutmedications and then noticing a change in disease activ-ity. The process of altering ULT or diet and observing areaction describes a self-initiated learning experience forTable 1 Conceptual categories and example quotations fromparticipants for theme 1Theme 1: Processing the diagnosis and management of goutConceptual category Example quotationsAdapting to gout “I’m very, I’m very careful for what I am eating or,or drinking.”(Participant 5, male)“You plan your day around how you feel.”(Participant 11, male)Searching for reason “I don’t know whether it was because I wasparticularly dehydrated when I took the bloodtest or maybe I’d consumed more of the triggersleading up to it.” (Participant 8, male)“If I have a, a gout what’s this, a flared up, Ialways have tears in my eyes, why me, why me,I ask myself, why me.” (Participant 5, male)Testing the waters “Because I hadn’t been having flare ups, I, I felt Icould indulge a little bit more in some of the foodsthat I knew that were triggers.” (Participant 8, male)“So I took it [allopurinol] every other day for a whileand I held my own and then I tried every second dayfor maybe a couple of weeks.” (Participant 7, female)Howren et al. Arthritis Research & Therapy  (2018) 20:110 Page 3 of 8participants. From another perspective, a participantwith high SUA or gout flares noticed the reduction ofsymptoms after starting allopurinol: “There was a drasticimprovement after 6 months and then gradual improve-ments ever since” (participant 1, male).Related to this is the category resonating importance ofgout medications, which details how participants attri-bute the improvement in their gout symptoms as adirect result of their gout medications. Consequently,the majority of participants expressed being committedto taking their medication and shared the commonsentiment of “I won’t stop taking those medicines”(participant 5, male).Several participants with gout remarked on developingacceptance in terms of medications and the prognosis ofgout. Developing acceptance describes the hurdles over-come by participants toward being in a position toactively manage their gout. Some participants discussedthe acceptance of medications such as accepting the sideeffects and the longevity of ULT. This encompassesknowing the potential side effects and ultimatelydeciding that the benefits of medication outweigh thepotential for adverse reactions. Although a general re-sistance to taking medications also seems to be involvedin this process, as one participant reflected on his deci-sion making, “I don’t wanna take it, but I have no choice.I have to take it every day” (participant 5, male).Additional example quotations pertaining to this themeare provided in Table 2.Theme 3: interfering with management of goutThe third theme, interfering with management of gout,describes challenges that participants with gout encoun-ter. Three of the five conceptual categories, dislikingTable 2 Conceptual categories and example quotations fromparticipants for themes 2 and 3Theme 2: Supporting management of goutConceptual category Example quotationsBeing organized “Well, I’m on other medications, so I’ve gota very regimented schedule when I take amedication.” (Participant 1, male)“It’s like brushing my teeth now, I gotta doit.” (Participant 2, male)Identifying motivation “If I don’t take my medication, I don’t wantto get sick, right, because I’ve got to takecare of my family and my husband andmy housework too… and then I do myvolunteering too.” (Participant 3, female)“Remembering what it’s like to have difficultygetting, getting your shoe on and walkingaround.” (Participant 9, male)Taking control “I mean the bottom line is I’m the patientand know my body so ultimately it becomesmy responsibility.” (Participant 12, male)“then in my you know research online, I dida little bit more, I discovered a few more thingsand what the, what the causes were.”(Participant 8, male)Seeing a difference “Now it’s down to about 350, 360, which isobviously a huge difference taking themedication.” (Participant 2, male)“Well, it was about a year after but yeah,it (gout) came back, and I stopped it(medication) myself. I, I shouldn’t have.I probably should just have continued,you know.” (Participant 6, male)Resonating importanceof gout medications“I really had the suspicion the way in whichI’ve, I’ve reacted to the sole, solely to themedication change.” (Participant 9, male)“The lesson I’ve learnt is not to stop theallopurinol.” (Participant 6, male)Developing acceptance “[rheumatologist] said it’s probably takenme 30 years to get this bad so it’s notgonna go away in five minutes.”(Participant 11, male)“I mean you know like you wake up oneday and you’ve got, got this funny pain inyour body, you go to see the doctor andultimately you go through the process.”(Participant 12, male)Theme 3: Interfering with management of goutConceptual category Example quotationsDisliking taking medication “I don’t particularly like relying on medicationin general so I guess it’s just personal philosophy.”(Participant 8, male)“I ended up at you know taking more andmore medications to the stage that it, Iwasn’t really comfortable with that.”(Participant 9, male)Fearing side effects “And I guess not knowing, not knowing whatthe medication’s really gonna do say 10 yearsfrom now. Obviously they don’t makemedications to kill you, right?”(Participant 2, male)“But then again you know the side effect andall that is I’m so scared.” (Participant 3, female)Affecting personal identity “You know like if I had, if I had any choice inthe matter, I’d, I’d rather be in a positionTable 2 Conceptual categories and example quotations fromparticipants for themes 2 and 3 (Continued)where you know like I’m, I have my healthback that I had in my youth but that’sa dream.”(Participant 12, male)“Well if he says women don’t have gout,what’s this in my toes and why did theygive me shots of whatever at the hospitaland why did they extract what they toldme was tophi.” (Participant 7, female)Forgetting medications “Not on purpose. I, I go away for a weekendfor example and leave it at home, justbecause I’d forgotten it.” (Participant 9, male)“Well if I do, I just take it a little bit later,that’s all.” (Participant 10, male)Lacking knowledge/beingmisinformed“Well, I only took it periodically, maybe fora week and my gout rescinded. So I didn’tsee any sense in taking it again.”(Participant 1, male)“Yeah, it’s, because you know just myunderstanding of, of my medications, I tookit wrong.” (Participant 5, male)Howren et al. Arthritis Research & Therapy  (2018) 20:110 Page 4 of 8taking medication, fearing side effects, and affectingpersonal identity, represent perceptual barriers, whereasthe last two categories, forgetting medications and lack-ing knowledge or being misinformed, represent practicalbarriers (Table 2).The conceptual category disliking taking medicationscaptures a general aversion of some participants towardconsuming medications. Many expressed feeling uncom-fortable with taking medications, especially daily medica-tions or a number of different medications, whereasanother expressed how one can “just have a mentalblock in your head about taking medications” (partici-pant 2, male).Four participants expressed fearing side effects of theirgout medications, such as how the medications couldharm their kidneys.Affecting personal identity describes a phenomenon inwhich some participants undergo a process of self-reflection and may feel reluctance to accepting theirdiagnosis. Indeed, a disposition toward taking daily ULTcan be fueled by the reluctance to accept beingdiagnosed with a chronic disease. For some participants,this stems from having misconceptions about gout orknowledge of the misleading stereotypes associated withgout. For other participants, being diagnosed with achronic condition prompted reflection on their own ageand health status.The final two categories identified practical barriers tooptimal gout management, specifically forgetting medica-tions and lacking knowledge/being misinformed. One par-ticipant shared how forgetting allopurinol was “not onpurpose” (participant 9, male), and another describedhow, for him, “It’s just not forgetting, it’s just ah, just be-ing lazy” (participant 2, male). For one participant, for-getting seemed to be connected to lacking knowledge,with the belief that ULT is “built up after, you know, aweek of taking it straight, missing it one day is probablynot going to be detrimental, right?” (participant 2, male).An additional frequent barrier voiced by participantswas insufficient education about gout or the medicationsbeing prescribed. Narratives expressed by participantsincluded the misconception of thinking there is no“cure” for gout, believing that ULT has a cumulativeeffect to prevent against future gout attacks, and misun-derstanding medication directions. A common experi-ence shared by participants was the decision todiscontinue their ULT early because they seemed uncon-vinced of the need for daily medication and wereunaware of the preventive nature of ULT.Framework for understanding engagement in goutmanagementThe relationship between three themes (interfering withmanagement of gout [theme 3], processing the diagnosisand management of gout [theme 1], and supportingmanagement of gout [theme 2]) is presented in Fig. 1,which shows that becoming engaged in the managementof gout is a dynamic process. It is important to note theposition of the themes in the process of becomingengaged in the management of gout: processing thediagnosis and management of gout is at the center of thespectrum, mediating the transition between interferingFig. 1 Schematic of three main themes constructed in the qualitative analysis to describe the process of being engaged in management of gout.Themes are shown in the bold gradient arrow at the top of the figure, and the gradient represents the dynamic linkage among the themes. Beneatheach theme are boxes containing the corresponding categories. Solid black arrows within each theme depict relationships between categoriesHowren et al. Arthritis Research & Therapy  (2018) 20:110 Page 5 of 8with management of gout and supporting management ofgout. Through processing the diagnosis and managementof gout, participants gain an understanding of the causesof gout and discover methods by which to adapt to it.Within processing the diagnosis is testing the waters,which, based on the participants’ accounts, can movethem toward either supporting or interfering withadherence to treatment. Furthermore, the categoriestesting the waters and searching for reason, locatedwithin the theme processing the diagnosis and manage-ment of gout, are connected, as demonstrated by aparticipant who mentioned, “You’re trying to figure whatare you doing, what are you intaking in your system,”and the curiosity of dietary triggers caused the partici-pant to “test it for a while” (participant 2, male). Intrin-sic processes closely linked to participants developingacceptance are seeing a difference and understanding theresonating importance of gout medications. In noticing achange in their gout activity, many attributed thatchange to their medications, thereby reinforcing theimportance of ULT. The combination of noticing animprovement in their health and taking ULT ultimatelysupported the development of acceptance in terms ofactively managing their gout.DiscussionWe conducted a qualitative study using a constructivistgrounded theory approach to understand patients’experiences with gout and how patients become engagedin the management of gout within the context of receiv-ing care. Findings include one theme describing the ex-perience of gout, specifically processing the diagnosisand management of gout, as well as perceptual andpractical factors that influence the management of gout,which are distinguished as the themes supportingmanagement of gout and interfering with management ofgout. Furthermore, in exploring the relationships be-tween study themes, we constructed an explanatoryframework that explains how becoming engaged in goutmanagement is a dynamic process whereby patients maytransition through interfering with management of goutto processing the diagnosis and management of gout tosupporting management of gout. As such, an implicationof these findings is informing how healthcare providerscan mediate this process to improve care delivery andhealth outcomes.A considerable portion of prior qualitative research ingout has described barriers to adherence and manage-ment [16, 17, 30–42]; however, understanding of thefactors that support optimal gout management is incom-plete. We interviewed participants enrolled in a study ofan eHealth-supported collaborative care intervention forgout, which gave us an opportunity to understand thedeterminants that support management of gout.Although direct elucidation of supporting factors is in-frequent in prior literature, a review of available data re-vealed content related to three of our categories: beingorganized [16, 17, 31, 34, 41, 42], identifying motivation[16, 17, 31–33, 35, 42], and taking control [17, 32, 41].Our present study contributes to the literature byconstructing and comprehensively describing thesecategories.A unique finding in this study was the integrated rela-tionship among three categories—developing acceptance,seeing a difference, and resonating importance of goutmedications—constructed within the theme supportingmanagement of gout. These findings demonstrate thepower of patient perceptions regarding illness andmedications within the process of increasing engage-ment in the management of gout [43]. Moreover, thisrepresents an opportunity for healthcare providersbecause they can encourage this resolution to developacceptance by reviewing with patients their SUA overtime, tracking gout activity, and discussing goutpathogenesis.Along with a comprehensive description of elementsthat support gout management, key to our study is thedevelopment of an explanatory framework for conveyinghow patients with gout become engaged in managingtheir disease. Only two previous studies have describedframeworks for understanding patients’ experiences withgout [17, 35]. In the first study, Richardson et al.reported determinants of ULT uptake and developed aframework describing ULT acceptance as dynamic, thusproviding support for continual follow-up for patientswith gout [35]. This study demonstrated findings similarto those in our study regarding how noticing a differencein gout symptoms can positively influence disease man-agement [35]. The second study, by Singh et al., was fo-cused on the experiences of African American maleveterans with gout who were adherent to ULT and de-ductively conceptualized self-management using anexisting framework, the Health Belief Model [17]. Anadvantage of the inductive framework constructed in ourstudy is that findings are drawn directly from the pa-tients’ perspectives and expand on the current literatureregarding gout management to thereby impart health-care providers with a basis for understanding the uniqueperceptions held by patients with gout. As patients enterthe healthcare system, they hold beliefs that undoubtedlyinfluence the impending course of management [27, 44],and as such, having healthcare providers attuned tothese perceptual and practical factors along thecontinuum of gout management will inform opportun-ities to optimize care delivery. For example, when thebehavior of taking control of gout management appearsabsent, healthcare providers can assist patients by pro-viding a thorough plan for medication-taking and copingHowren et al. Arthritis Research & Therapy  (2018) 20:110 Page 6 of 8with gout flares, as well as encouraging patients to userecommended resources.A unique feature of our qualitative study is that it isnested within an eHealth-supported collaborative caremodel for gout, which is well-suited to our aim of under-standing how patients with gout can become engaged inmanaging their disease within the context of receivingcare. In particular, this study adds to the comprehensionof the patient experience with gout by constructing atheme to describe the processing of the diagnosis and man-agement of gout. During the diagnosis, patients may searchfor reasons for having gout and the cause of gout flares,which is similar to a narrative described for U.K. patientswith gout [32]. The behavior characterized as testing thewaters in this study was predisposed by lacking knowledgeabout medications or being unconvinced of one’s suscepti-bility to future gout attacks. When participants modifiedtheir diet or ULT, often gout symptoms reappeared andwould reinforce the need to be engaged in gout manage-ment. This process of receiving physiological feedbackwhen testing the waters may be a feature unique to pa-tients with gout, given that disease manifestations arefairly immediate. These findings emphasize the import-ance of providing continual follow-up beyond the initialdiagnosis when patients may be inclined to trial medica-tions or diet and allied healthcare providers are well-suited to supporting these key components of gout care.There are strengths and limitations to this study thatneed to be considered. Strengths include the study design,because constructivist grounded theory uses techniquessuch as inductive analysis, constant comparison, and re-flexivity to ensure that results are representative of the pa-tient experience. Furthermore, we observed saturation inour study through simultaneous data gathering and ana-lysis along with application of the constant comparativemethod. Limitations include the recruitment method, be-cause individuals were perhaps inclined to discuss factorsthat support gout management, given their participationin a larger study evaluating a model of gout care and thatthose enrolled in research studies generally display health-ier behaviors. The purposeful sampling strategy helped tocompensate for this problem by selecting participants withboth unmanaged and well-managed gout to represent arange of experiences. Another limitation is the recruit-ment being restricted to rheumatology practices, becausethe majority of individuals with gout are treated in pri-mary care. However, detailed description allows the trans-ferability of results, and the findings of this study areconfirmed with qualitative publications derived from bothrheumatology and primary practices.ConclusionsThis study provides insight into factors that support op-timal management and has constructed a framework forelucidating the process of becoming engaged in goutmanagement. By understanding the entire continuum ofpatient engagement in gout management, healthcareproviders, including rheumatologists as well as alliedhealth professionals, can adapt care delivery to patientswho require support in specific domains [45].FundingAH was a recipient of a Canadian Institutes of Health Research FrederickBanting and Charles Best Canada Graduate Scholarship – Master’s Program.MADV holds a Canada Research Chair in Medication Adherence, Utilization,and Outcomes and is a recipient of a Network Scholar Award from theArthritis Society/Canadian Arthritis Network and a Scholar Award from theMichael Smith Foundation for Health Research. This study was supported byan operating grant from the Canadian Initiative for Outcomes in RheumatologyCare and a team grant titled “PRECISION: Preventing Complications fromInflammatory Skin, Joint and Bowel Conditions” (THC number 135235) fromthe Canadian Institutes of Health Research.Availability of data and materialsThe datasets generated and/or analyzed during the present study are notpublicly available, owing to the identifying information of study participantsin the interviews, but they are available from the corresponding author onreasonable request.Authors’ contributionsAH contributed to study conception and design, collection of data throughinterviews, analysis and interpretation of data, and drafting critical revision ofthe manuscript. SMC contributed to study design, interpretation of data, anddrafting and critical revision of the manuscript. KS and HKC contributed tostudy conception and design, interpretation of the data, and critical revisionof the manuscript. SKR contributed to study design, interpretation of thedata, and critical revision of the manuscript. MADV contributed to studyconception and design, acquisition of the data, analysis and interpretationof data, and drafting and critical revision of the manuscript. All authors readand approved the final manuscript.Ethics approval and consent to participateThis study was reviewed and approved by the University of British ColumbiaBehavioural Research Ethics Board (H16-02061), and written consent wasreceived from all study participants.Competing interestsHKC reports receiving grants from AstraZeneca and consulting fees fromTakeda, Selecta, and Horizon outside the submitted work. The other authorsdeclare that they have no competing interests.Publisher’s NoteSpringer Nature remains neutral with regard to jurisdictional claims inpublished maps and institutional affiliations.Author details1Faculty of Pharmaceutical Sciences, University of British Columbia, 2405Wesbrook Mall, Vancouver, BC V6T 1Z3, Canada. 2Arthritis Research Canada,Richmond, BC, Canada. 3Collaboration for Outcomes Research andEvaluation, Vancouver, BC, Canada. 4University of British Columbia, School ofPopulation & Public Health, Vancouver, BC, Canada. 5Faculty of Medicine,Department of Medicine, Division of Rheumatology, University of BritishColumbia, Vancouver, BC, Canada. 6Department of Nutrition, Harvard T.H.Chan School of Public Health, Boston, MA, USA. 7Population Health SciencesProgram, Graduate School of Arts and Sciences, Harvard University,Cambridge, MA, USA. 8Division of Rheumatology, Allergy and Immunology,Department of Medicine, Massachusetts General Hospital, Harvard MedicalSchool, Boston, MA, USA.Howren et al. Arthritis Research & Therapy  (2018) 20:110 Page 7 of 8Received: 15 January 2018 Accepted: 26 April 2018References1. Neogi T, Hunter DJ, Chaisson CE, Allensworth-Davies D, Zhang Y. Frequencyand predictors of inappropriate management of recurrent gout attacks in alongitudinal study. J Rheumatol. 2006;33:104–9.2. Lottmann K, Chen X, Schadlich PK. Association between gout and all-causeas well as cardiovascular mortality: a systematic review. Curr Rheumatol Rep.2012;14:195–203.3. Fisher MC, Rai SK, Lu N, Zhang Y, Choi HK. The unclosing prematuremortality gap in gout: a general population-based study. Ann Rheum Dis.2017;76:1289–94.4. Rai SK, Avina-Zubieta JA, McCormick N, De Vera MA, Shojania K, Sayre EC,et al. The rising prevalence and incidence of gout in British Columbia,Canada: population-based trends from 2000 to 2012. Semin Arthritis Rheum.2017;46:451–6.5. De Vera MA, Marcotte G, Rai S, Galo JS, Bhole V. Medication adherence ingout: a systematic review. Arthritis Care Res. 2014;66:1551–9.6. Cottrell E, Crabtree V, Edwards JJ, Roddy E. Improvement in themanagement of gout is vital and overdue: an audit from a UK primary caremedical practice. BMC Fam Pract. 2013;14:170.7. Singh JA, Hodges JS, Toscano JP, Asch SM. Quality of care for gout in theUS needs improvement. Arthritis Rheum. 2007;57:822–9.8. Roddy E, Zhang W, Doherty M. Concordance of the management ofchronic gout in a UK primary-care population with the EULAR goutrecommendations. Ann Rheum Dis. 2007;66:1311–5.9. Doherty M, Jansen TL, Nuki G, Pascual E, Perez-Ruiz F, Punzi L, et al. Gout:why is this curable disease so seldom cured? Ann Rheum Dis. 2012;71:1765–70.10. Wise E, Khanna PP. The impact of gout guidelines. Curr Opin Rheumatol.2015;27:225–30.11. Rees F, Jenkins W, Doherty M. Patients with gout adhere to curativetreatment if informed appropriately: proof-of-concept observational study.Ann Rheum Dis. 2012;72:826–30.12. Goldfien R, Pressman A, Jacobson A, Ng M, Avins A. A pharmacist-staffed,virtual gout management clinic for achieving target serum uric acid levels: arandomized clinical trial. Perm J. 2016;20:18–23.13. Goldfien RD, Ng MS, Yip G, Hwe A, Jacobson A, Pressman A, et al. Effectivenessof a pharmacist-based gout care management programme in a largeintegrated health plan: results from a pilot study. BMJ Open. 2014;4:e003627.14. Green J, Britten N. Qualitative research and evidence based medicine. BMJ.1998;316:1230–2.15. Rai SK, Choi H, Choi SHJ, Townsend A, Shojania K, De Vera M. Key barriers togout care: a systematic review and thematic synthesis of qualitative studies.Rheumatology (Oxford). 2018; https://doi.org/10.1093/rheumatology/kex530.16. Singh JA. Facilitators and barriers to adherence to urate-loweringtherapy in African-Americans with gout: a qualitative study. Arthritis ResTher. 2014;16:R82.17. Singh JA, Herbey I, Bharat A, Dinnella JE, Pullman-Mooar S, Eisen S, et al.Gout self-management in African-American veterans: a qualitativeexploration of challenges and solutions from patients’ perspectives. ArthritisCare Res. 2017;69:1724–32.18. De Vera MA, Howren A, Tsao N, Choi H, Kydd A, Friesen K, et al. THU0442eHealth supported collaborative care model for gout involvingrheumatology, pharmacy, and dietetics: proof of concept observationalstudy [abstract]. Ann Rheum Dis. 2017;76(Suppl 2):374–375.19. Charmaz K. Constructing grounded theory. 2nd ed. London: Sage; 2014.20. Sandelowski M. Whatever happened to qualitative description? Res NursHealth. 2000;23:334–40.21. de Klerk E, van der Heijde D, Landewe R, van der Tempel H, van der LindenS. The compliance-questionnaire-rheumatology compared with electronicmedication event monitoring: a validation study. J Rheumatol. 2003;30:2469–75.22. de Klerk E, van der Heijde D, van der Tempel H, van der Linden S.Development of a questionnaire to investigate patient compliance withantirheumatic drug therapy. J Rheumatol. 1999;26:2635–41.23. Hughes LD, Done J, Young A. A 5 item version of the ComplianceQuestionnaire for Rheumatology (CQR5) successfully identifies lowadherence to DMARDs. BMC Musculoskelet Disord. 2013;14:286.24. Hughes LD, Young A, Done D, Treharne G. A five item Compliance Questionnairefor Rheumatology (CQR5) can effectively predict low adherence to DMARDs inrheumatology clinics [abstract 184]. Rheumatology (Oxford). 2010;49(Suppl 1):i103.25. Kvale S. InterViews: an introduction to qualitative research interviewing.Thousand Oaks, CA: Sage; 1996.26. Leech BL. Asking questions: techniques for semistructured interviews. PSPolit Sci Polit. 2002;35:665–8.27. Van Camp YPM, Bastiaens H, Van Royen P, Vermeire E. Qualitative evidencein treatment adherence. In: Olson K, Young RA, Schultz IZ, editors.Handbook of qualitative research for evidence-based practice. New York:Springer; 2016. p. 373–90.28. Glaser B, Strauss A. The discovery of grounded theory: strategies forqualitative research. Chicago: Aldine; 1967.29. Bowen GA. Naturalistic inquiry and the saturation concept: a research note.Qual Res. 2008;8:137–52.30. Chandratre P, Mallen CD, Roddy E, Liddle J, Richardson J. “You want to geton with the rest of your life”: a qualitative study of health-related quality oflife in gout. Clin Rheumatol. 2015;35:1197–205.31. Harrold LR, Mazor KM, Velten S, Ockene IS, Yood RA. Patients and providersview gout differently: a qualitative study. Chronic Illn. 2010;6:263–71.32. Liddle J, Roddy E, Mallen CD, Hider SL, Prinjha S, Ziebland S, et al. Mappingpatients’ experiences from initial symptoms to gout diagnosis: a qualitativeexploration. BMJ Open. 2015;5:e008323.33. Lindsay K, Gow P, Vanderpyl J, Logo P, Dalbeth N. The experience andimpact of living with gout: a study of men with chronic gout using aqualitative grounded theory approach. J Clin Rheumatol. 2011;17:1–6.34. Martini N, Bryant L, Te Karu L, Aho L, Chan R, Miao J, et al. Living with goutin New Zealand: an exploratory study into people's knowledge about thedisease and its treatment. J Clin Rheumatol. 2012;18:125–9.35. Richardson JC, Liddle J, Mallen CD, Roddy E, Hider S, Prinjha S, et al. A jointeffort over a period of time: factors affecting use of urate-lowering therapyfor long-term treatment of gout. BMC Musculoskelet Disord. 2016;17:249.36. Richardson JC, Liddle J, Mallen CD, Roddy E, Prinjha S, Ziebland S, et al.“Why me? I don’t fit the mould ... I am a freak of nature”: a qualitative studyof women’s experience of gout. BMC Womens Health. 2015;15:122.37. Singh JA. The impact of gout on patient's lives: a study of African-Americanand Caucasian men and women with gout. Arthritis Res Ther. 2014;16:R132.38. Singh JA. Challenges faced by patients in gout treatment: a qualitativestudy. J Clin Rheumatol. 2014;20:172–4.39. Spencer K, Carr A, Doherty M. Patient and provider barriers to effectivemanagement of gout in general practice: a qualitative study. Ann RheumDis. 2012;71:1490–5.40. Te Karu L, Bryant L, Elley CR. Maori experiences and perceptions of goutand its treatment: a kaupapa Maori qualitative study. J Prim Health Care.2013;5:214–22.41. Vaccher S, Kannangara DR, Baysari MT, Reath J, Zwar N, Williams KM, et al.Barriers to care in gout: from prescriber to patient. J Rheumatol. 2016;43:144–9.42. van Onna M, Hinsenveld E, de Vries H, Boonen A. Health literacy in patientsdealing with gout: a qualitative study. Clin Rheumatol. 2015;34:1599–603.43. Horne R, Weinman J, Barber N, Elliott R, Morgan M. Concordance,adherence and compliance in medicine taking: report for the NationalCoordinating Centre for NHS Service Delivery and Organisation R&D(NCCSDO). London: NCCDSO; 2005.44. Horne R, Weinman J. Patients’ beliefs about prescribed medicines and theirrole in adherence to treatment in chronic physical illness. J Psychosom Res.1999;47:555–67.45. Morse JM. What use is it anyway? Considering modes of application andcontributions of qualitative inquiry. In: Olson K, Young RA, Schultz IZ,editors. Handbook of qualitative health research for evidence-basedpractice. New York: Springer; 2016. p. 429–40.Howren et al. Arthritis Research & Therapy  (2018) 20:110 Page 8 of 8

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