How patients with gout become engaged in disease management: a constructivist grounded theory study

How patients with gout become engaged in disease management: a constructivist grounded theory study Background: Prior qualitative research on gout has focused primarily on barriers to disease management. Our objective was to use patients’ perspectives to construct an explanatory framework to understand how patients become 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 an eHealth-supported collaborative care model for gout involving rheumatology, pharmacy, and dietetics. Semistructured interviews were used. We analyzed transcripts using principles of constructivist grounded theory involving initial coding, 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. The analysis resulted in the construction of three themes as well as a framework describing the dynamically linked themes on (1) processing the diagnosis and management of gout, (2) supporting management of gout, and (3) interfering with management of gout. In this framework, patients with gout transition between each theme in the process of becoming engaged in the management of their gout and may represent potential opportunities for healthcare intervention. Conclusions: Findings derived from this study show that becoming engaged in gout management is a dynamic process whereby patients with gout experience factors that interfere with gout management, process their disease and its management, and develop the practical and perceptual skills necessary to manage their gout. By understanding this process, healthcare providers can identify points to adapt care delivery and thereby improve health outcomes. Keywords: Gout, Qualitative research, Grounded theory, Disease management Background optimizing care delivery and improving outcomes for pa- Despite the availability of effective medication therapy in tients with gout [9, 10], including models of care delivery the form of urate-lowering therapy (ULT), studies have involving allied healthcare providers such as rheumatol- consistently reported suboptimal outcomes, including ogy nurses [11] and pharmacists [12, 13]. repeated flares [1], increased cardiovascular mortality Aside from novel models of care, also important to [2], and excess all-cause mortality [2, 3], for individuals improving the quality of care for gout is an understand- with gout, the most common inflammatory arthritis in ing of the patient’s perspective, particularly through men [4]. Factors contributing to suboptimal patient applying qualitative inquiry because this has the capacity outcomes include poor adherence to ULT, with rates to elucidate the discordance between evidence-based ranging from 10% to 46% [5], and insufficient quality of practice and the reality of managing gout [14]. Qualita- care [6–8]. As such, efforts are presently focused on tive research in gout has been published in the United States, the United Kingdom, Australia, New Zealand, * Correspondence: mdevera@mail.ubc.ca and the Netherlands, with a recent thematic synthesis by Faculty of Pharmaceutical Sciences, University of British Columbia, 2405 our group showing that studies have primarily reported Wesbrook Mall, Vancouver, BC V6T 1Z3, Canada barriers to optimal management of gout from patients’ Arthritis Research Canada, Richmond, BC, Canada Full 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 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the 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 Page 2 of 8 as well as providers’ perspectives, primarily situated within We applied the criteria of completion of a minimum of traditional care delivery models [15]. Although a 2014 6 months of follow-up in the Virtual Gout Study with at study evaluated factors that influence ULT adherence [16] least one pharmacist and one dietitian consult, able to and a 2017 study explored solutions for self-management provide informed consent, having access to a phone, and among African American male veterans [17], the findings able to comprehend and speak English. are limited in scope with respect to a focus on medication use [16] and a distinct patient sample [17]. Current know- Data gathering ledge gaps include how patients with gout can best be Semistructured interviews, using adaptable probes and supported in the context of receiving care. As such, to prompts, were conducted with participants by a single inform optimal caredeliverythrough a patient-centered author (AH) over the telephone. Each interview was lens, we aimed to explore individual experiences with gout started by briefing the participant on the subject matter to understand how they become engaged in the manage- and purpose and situating the participant as the expert ment of gout in the context of receiving care. early in the interview [25, 26]. A topic guide with open- ended questions was developed and revised by study Methods authors (AH, SMC, SKR, MADV), and the interview Study design was focused on exploring participants’ experiences with We conducted a qualitative study nested within the gout before and during the Virtual Gout Study, manage- Virtual Gout Study, a longitudinal proof-of-concept ment of gout, perceptions of disease activity, and beliefs study evaluating an eHealth-supported collaborative care and behaviors surrounding gout medications. Interviews model involving rheumatology, pharmacy, and dietetics were recorded using a WS-853 digital voice recorder for gout in British Columbia, Canada [18]. In brief, in (Olympus, Center Valley, PA, USA). Professional this novel decentralized model, eight community transcription service providers transcribed each audio- rheumatologists’ electronic medical records (EMR) for recorded interview. consented participants with gout were shared with a study pharmacist and study dietitian who provided con- Analysis sultations, respectively, via telephone. As such, this We followed three main steps of the coding process of shared EMR supported remote communication and col- constructivist grounded theory: initial coding, focused laboration among health professionals. The descriptive coding and categorizing, and theoretical coding [19]. For qualitative study was informed by constructivist the initial coding phase, we conducted line-by-line coding. grounded theory, an approach that is well suited to the Focused coding narrowed the scope of the qualitative ana- study of social processes and gaining an in-depth under- lysis by identifying initial codes that held analytical signifi- standing of participants’ lived experiences [19, 20]. cance or were repetitive. Last, theoretical coding was done with the aim of interpreting relationships between con- Participant recruitment structed categories [19]. On the basis of emerging analysis We invited individuals from the Virtual Gout Study, as well as prior knowledge that poor ULT adherence [5] which included patients with confirmed gout who were and management [6–8] underlie suboptimal health out- seen in one of four participating rheumatology practices comes in gout, we explored previous analytic constructs and had at least one flare in the past year and serum uric that pertain to treatment adherence to inform the acid (SUA) level > 360 μmol/L in the past 2 months (at emerging theoretical codes [27]. Analytical techniques time of recruitment) to participate in our qualitative such as the constant comparative method and memo- study. According to the Virtual Gout Study protocol, writing were applied throughout [19, 28]. Data gathering participants (1) were seen by their rheumatologists on and analysis were carried out in an iterative process such an as-needed basis; (2) had monthly (or as-needed) tele- that participants were interviewed until saturation was phone consults with the study pharmacist, including achieved. This is the point where no new insights into the medication reviews (e.g., discussion of ULT dosage, constructed categories and themes emerged [29]. We used medication adherence, discontinuation of unnecessary NVivo 11 (QSR International, Doncaster, Australia) for all medications), and discussion of laboratory test results; analyses. This study was reviewed and approved by the and (3) one telephone consult with the study dietitian University of British Columbia Behavioural Research regarding dietary recommendations for gout. To explore Ethics Board (H16–02061). a range of experiences, we purposefully sampled inter- view participants according to SUA level and self- Results reported adherence using the five-item version of the Twelve participants with gout (ten males, two females; Compliance Questionnaire for Rheumatology (CQR5) mean age, 66.5 ± 13.3 years) were interviewed over the [21–24], as measured in the Virtual Gout Study. telephone. Mean SUA as recorded in the Virtual Gout Howren et al. Arthritis Research & Therapy (2018) 20:110 Page 3 of 8 Study nearest the time of interview was 387 μmol/L (± which participants mentioned instances when they 110 μmol/L). Six participants had SUA > 360 μmol/L trialed their diet or modified their medications. This and/or were classified as nonadherent by the CQR5. All self-experimentation often occurred during a period participants were prescribed ULT at the time of the when participants reached a level of comfort with gout interview. The average duration of the interviews was management or an asymptomatic period. For one par- 33 minutes. The analysis resulted in the construction of ticipant, concern about side effects of gout medications three themes: (1) processing the diagnosis and manage- preceded modification to medications. ment of gout, (2) supporting management of gout, and (3) interfering with management of gout. In addition, we Theme 2: supporting management of gout used an explanatory framework to illustrate the process The second theme of supporting management of gout of becoming engaged in gout management. comprised six conceptual categories: (1) being organized, (2) identifying motivation, (3) taking control, (4) seeing a Themes difference, (5) resonating importance of gout medica- Theme 1: processing the diagnosis and management of tions, and (6) developing acceptance. A common sup- gout porter of managing gout that participants identified was The first theme, processing the diagnosis and manage- a sense of being organized, whether an inherent or ment of gout, which encompassed how participants acquired behavior. Some participants were taking several learn to navigate their diagnosis, comprised conceptual medications for other conditions, and therefore an categories of: (1) adapting to gout, (2) searching for emphasis was placed on the necessity of taking and reason, and (3) testing the waters (Table 1). Adapting to scheduling their treatments. Many participants discussed gout describes how participants found ways to modify how taking their gout medications had become a routine their lifestyles, including practical changes, acclimatizing integrated into their daily schedule or was paired with to the pain, and modifying diet. Practical changes in- an already established daily activity. cluded participants adjusting their activity levels on the The category identifying motivation describes the rea- basis of disease activity and making accommodations (e. son why participants are compelled to take their gout g., footwear, aids/devices), whereas dietary modifications medications. Most participants stated that they contin- included identifying and avoiding personal triggers such ued to take their medications to avoid the immense pain as acidic foods, alcohol, and seafood. Searching for experienced during gout flares. As such, it seems that reason describes the process shared by some participants most participants had made the connection between ad- in which they sought to find reasons for having gout, hering to daily ULT and the prevention of future pain such as questioning the relationship between diet and a from gout. A few participants mentioned the need to get high SUA or undergoing the emotional experience of back to day-to-day activities to improve their health as a questioning why they have gout and why they have to significant motivator as well as to avoid visits to the endure such pain. Last, testing the waters is a process in hospital or their physician’s office. Taking control refers to participants having an active Table 1 Conceptual categories and example quotations from role in managing their gout. Participants relayed a sense participants for theme 1 of personal responsibility such as being proactive and Theme 1: Processing the diagnosis and management of gout taking initiative, acknowledging the importance of know- Conceptual category Example quotations ing one’s own body (e.g., triggers of gout flares), and Adapting to gout “I’m very, I’m very careful for what I am eating or, feeling that “my health is my concern” (participant 5, or drinking.” male). Also mentioned by participants was being (Participant 5, male) proactive in terms of searching for information about “You plan your day around how you feel.” (Participant 11, male) gout online and requesting an appointment with a spe- cialist. In addition, some participants mentioned having Searching for reason “I don’t know whether it was because I was particularly dehydrated when I took the blood a personal plan to deal with future gout flares, including test or maybe I’d consumed more of the triggers knowing when to take colchicine, which appeared to es- leading up to it.” (Participant 8, male) tablish confidence in managing their disease. “If I have a, a gout what’s this, a flared up, I always have tears in my eyes, why me, why me, The category seeing a difference refers to moments I ask myself, why me.” (Participant 5, male) during treatment in which participants realized the role Testing the waters “Because I hadn’t been having flare ups, I, I felt I that medications and diet play in modifying their gout could indulge a little bit more in some of the foods symptoms, such as when stopping or initiating gout that I knew that were triggers.” (Participant 8, male) medications and then noticing a change in disease activ- “So I took it [allopurinol] every other day for a while and I held my own and then I tried every second day ity. The process of altering ULT or diet and observing a for maybe a couple of weeks.” (Participant 7, female) reaction describes a self-initiated learning experience for Howren et al. Arthritis Research & Therapy (2018) 20:110 Page 4 of 8 Table 2 Conceptual categories and example quotations from Table 2 Conceptual categories and example quotations from participants for themes 2 and 3 participants for themes 2 and 3 (Continued) Theme 2: Supporting management of gout where you know like I’m, I have my health back that I had in my youth but that’s Conceptual category Example quotations a dream.” (Participant 12, male) Being organized “Well, I’m on other medications, so I’ve got “Well if he says women don’t have gout, a very regimented schedule when I take a what’s this in my toes and why did they medication.” (Participant 1, male) give me shots of whatever at the hospital “It’s like brushing my teeth now, I gotta do and why did they extract what they told it.” (Participant 2, male) me was tophi.” (Participant 7, female) Identifying motivation “If I don’t take my medication, I don’t want Forgetting medications “Not on purpose. I, I go away for a weekend to get sick, right, because I’ve got to take for example and leave it at home, just care of my family and my husband and because I’d forgotten it.” (Participant 9, male) my housework too… and then I do my “Well if I do, I just take it a little bit later, volunteering too.” (Participant 3, female) that’s all.” (Participant 10, male) “Remembering what it’s like to have difficulty getting, getting your shoe on and walking Lacking knowledge/being “Well, I only took it periodically, maybe for around.” (Participant 9, male) misinformed a week and my gout rescinded. So I didn’t see any sense in taking it again.” Taking control “I mean the bottom line is I’m the patient (Participant 1, male) and know my body so ultimately it becomes “Yeah, it’s, because you know just my my responsibility.” (Participant 12, male) understanding of, of my medications, I took “then in my you know research online, I did it wrong.” (Participant 5, male) a little bit more, I discovered a few more things and what the, what the causes were.” (Participant 8, male) participants. From another perspective, a participant Seeing a difference “Now it’s down to about 350, 360, which is with high SUA or gout flares noticed the reduction of obviously a huge difference taking the symptoms after starting allopurinol: “There was a drastic medication.” (Participant 2, male) “Well, it was about a year after but yeah, improvement after 6 months and then gradual improve- it (gout) came back, and I stopped it ments ever since” (participant 1, male). (medication) myself. I, I shouldn’t have. Related to this is the category resonating importance of I probably should just have continued, you know.” (Participant 6, male) gout medications, which details how participants attri- Resonating importance “I really had the suspicion the way in which bute the improvement in their gout symptoms as a of gout medications I’ve, I’ve reacted to the sole, solely to the direct result of their gout medications. Consequently, medication change.” (Participant 9, male) the majority of participants expressed being committed “The lesson I’ve learnt is not to stop the allopurinol.” (Participant 6, male) to taking their medication and shared the common sentiment of “I won’t stop taking those medicines” Developing acceptance “[rheumatologist] said it’s probably taken me 30 years to get this bad so it’s not (participant 5, male). gonna go away in five minutes.” Several participants with gout remarked on developing (Participant 11, male) acceptance in terms of medications and the prognosis of “I mean you know like you wake up one day and you’ve got, got this funny pain in gout. Developing acceptance describes the hurdles over- your body, you go to see the doctor and come by participants toward being in a position to ultimately you go through the process.” actively manage their gout. Some participants discussed (Participant 12, male) the acceptance of medications such as accepting the side Theme 3: Interfering with management of gout effects and the longevity of ULT. This encompasses Conceptual category Example quotations knowing the potential side effects and ultimately Disliking taking medication “Idon’t particularly like relying on medication deciding that the benefits of medication outweigh the in general so I guess it’s just personal philosophy.” potential for adverse reactions. Although a general re- (Participant 8, male) “I ended up at you know taking more and sistance to taking medications also seems to be involved more medications to the stage that it, I in this process, as one participant reflected on his deci- wasn’t really comfortable with that.” sion making, “I don’t wanna take it, but I have no choice. (Participant 9, male) I have to take it every day” (participant 5, male). Fearing side effects “And I guess not knowing, not knowing what Additional example quotations pertaining to this theme the medication’s really gonna do say 10 years from now. Obviously they don’tmake are provided in Table 2. medications to kill you, right?” (Participant 2, male) Theme 3: interfering with management of gout “But then again you know the side effect and all that is I’msoscared.” (Participant 3, female) The third theme, interfering with management of gout, Affecting personal identity “You know like if I had, if I had any choice in describes challenges that participants with gout encoun- the matter, I’d, I’d rather be in a position ter. Three of the five conceptual categories, disliking Howren et al. Arthritis Research & Therapy (2018) 20:110 Page 5 of 8 taking medication, fearing side effects, and affecting purpose” (participant 9, male), and another described personal identity, represent perceptual barriers, whereas how, for him, “It’s just not forgetting, it’s just ah, just be- the last two categories, forgetting medications and lack- ing lazy” (participant 2, male). For one participant, for- ing knowledge or being misinformed, represent practical getting seemed to be connected to lacking knowledge, barriers (Table 2). with the belief that ULT is “built up after, you know, a The conceptual category disliking taking medications week of taking it straight, missing it one day is probably captures a general aversion of some participants toward not going to be detrimental, right?” (participant 2, male). consuming medications. Many expressed feeling uncom- An additional frequent barrier voiced by participants fortable with taking medications, especially daily medica- was insufficient education about gout or the medications tions or a number of different medications, whereas being prescribed. Narratives expressed by participants another expressed how one can “just have a mental included the misconception of thinking there is no block in your head about taking medications” (partici- “cure” for gout, believing that ULT has a cumulative pant 2, male). effect to prevent against future gout attacks, and misun- Four participants expressed fearing side effects of their derstanding medication directions. A common experi- gout medications, such as how the medications could ence shared by participants was the decision to harm their kidneys. discontinue their ULT early because they seemed uncon- Affecting personal identity describes a phenomenon in vinced of the need for daily medication and were which some participants undergo a process of self- unaware of the preventive nature of ULT. reflection and may feel reluctance to accepting their diagnosis. Indeed, a disposition toward taking daily ULT Framework for understanding engagement in gout can be fueled by the reluctance to accept being management diagnosed with a chronic disease. For some participants, The relationship between three themes (interfering with this stems from having misconceptions about gout or management of gout [theme 3], processing the diagnosis knowledge of the misleading stereotypes associated with and management of gout [theme 1], and supporting gout. For other participants, being diagnosed with a management of gout [theme 2]) is presented in Fig. 1, chronic condition prompted reflection on their own age which shows that becoming engaged in the management and health status. of gout is a dynamic process. It is important to note the The final two categories identified practical barriers to position of the themes in the process of becoming optimal gout management, specifically forgetting medica- engaged in the management of gout: processing the tions and lacking knowledge/being misinformed. One par- diagnosis and management of gout is at the center of the ticipant shared how forgetting allopurinol was “not on spectrum, mediating the transition between interfering Fig. 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. Beneath each theme are boxes containing the corresponding categories. Solid black arrows within each theme depict relationships between categories Howren et al. Arthritis Research & Therapy (2018) 20:110 Page 6 of 8 with management of gout and supporting management of Although direct elucidation of supporting factors is in- gout. Through processing the diagnosis and management frequent in prior literature, a review of available data re- of gout, participants gain an understanding of the causes vealed content related to three of our categories: being of gout and discover methods by which to adapt to it. organized [16, 17, 31, 34, 41, 42], identifying motivation Within processing the diagnosis is testing the waters, [16, 17, 31–33, 35, 42], and taking control [17, 32, 41]. which, based on the participants’ accounts, can move Our present study contributes to the literature by them toward either supporting or interfering with constructing and comprehensively describing these adherence to treatment. Furthermore, the categories categories. testing the waters and searching for reason, located A unique finding in this study was the integrated rela- within the theme processing the diagnosis and manage- tionship among three categories—developing acceptance, ment of gout, are connected, as demonstrated by a seeing a difference, and resonating importance of gout participant who mentioned, “You’re trying to figure what medications—constructed within the theme supporting are you doing, what are you intaking in your system,” management of gout. These findings demonstrate the and the curiosity of dietary triggers caused the partici- power of patient perceptions regarding illness and pant to “test it for a while” (participant 2, male). Intrin- medications within the process of increasing engage- sic processes closely linked to participants developing ment in the management of gout [43]. Moreover, this acceptance are seeing a difference and understanding the represents an opportunity for healthcare providers resonating importance of gout medications. In noticing a because they can encourage this resolution to develop change in their gout activity, many attributed that acceptance by reviewing with patients their SUA over change to their medications, thereby reinforcing the time, tracking gout activity, and discussing gout importance of ULT. The combination of noticing an pathogenesis. improvement in their health and taking ULT ultimately Along with a comprehensive description of elements supported the development of acceptance in terms of that support gout management, key to our study is the actively managing their gout. development of an explanatory framework for conveying how patients with gout become engaged in managing Discussion their disease. Only two previous studies have described We conducted a qualitative study using a constructivist frameworks for understanding patients’ experiences with grounded theory approach to understand patients’ gout [17, 35]. In the first study, Richardson et al. experiences with gout and how patients become engaged reported determinants of ULT uptake and developed a in the management of gout within the context of receiv- framework describing ULT acceptance as dynamic, thus ing care. Findings include one theme describing the ex- providing support for continual follow-up for patients perience of gout, specifically processing the diagnosis with gout [35]. This study demonstrated findings similar and management of gout, as well as perceptual and to those in our study regarding how noticing a difference practical factors that influence the management of gout, in gout symptoms can positively influence disease man- which are distinguished as the themes supporting agement [35]. The second study, by Singh et al., was fo- management of gout and interfering with management of cused on the experiences of African American male gout. Furthermore, in exploring the relationships be- veterans with gout who were adherent to ULT and de- tween study themes, we constructed an explanatory ductively conceptualized self-management using an framework that explains how becoming engaged in gout existing framework, the Health Belief Model [17]. An management is a dynamic process whereby patients may advantage of the inductive framework constructed in our transition through interfering with management of gout study is that findings are drawn directly from the pa- to processing the diagnosis and management of gout to tients’ perspectives and expand on the current literature supporting management of gout. As such, an implication regarding gout management to thereby impart health- of these findings is informing how healthcare providers care providers with a basis for understanding the unique can mediate this process to improve care delivery and perceptions held by patients with gout. As patients enter health outcomes. the healthcare system, they hold beliefs that undoubtedly A considerable portion of prior qualitative research in influence the impending course of management [27, 44], gout has described barriers to adherence and manage- and as such, having healthcare providers attuned to ment [16, 17, 30–42]; however, understanding of the these perceptual and practical factors along the factors that support optimal gout management is incom- continuum of gout management will inform opportun- plete. We interviewed participants enrolled in a study of ities to optimize care delivery. For example, when the an eHealth-supported collaborative care intervention for behavior of taking control of gout management appears gout, which gave us an opportunity to understand the absent, healthcare providers can assist patients by pro- determinants that support management of gout. viding a thorough plan for medication-taking and coping Howren et al. Arthritis Research & Therapy (2018) 20:110 Page 7 of 8 with gout flares, as well as encouraging patients to use elucidating the process of becoming engaged in gout recommended resources. management. By understanding the entire continuum of A unique feature of our qualitative study is that it is patient engagement in gout management, healthcare nested within an eHealth-supported collaborative care providers, including rheumatologists as well as allied model for gout, which is well-suited to our aim of under- health professionals, can adapt care delivery to patients standing how patients with gout can become engaged in who require support in specific domains [45]. managing their disease within the context of receiving care. In particular, this study adds to the comprehension Funding AH was a recipient of a Canadian Institutes of Health Research Frederick of the patient experience with gout by constructing a Banting and Charles Best Canada Graduate Scholarship – Master’s Program. theme to describe the processing of the diagnosis and man- MADV holds a Canada Research Chair in Medication Adherence, Utilization, agement of gout. During the diagnosis, patients may search and Outcomes and is a recipient of a Network Scholar Award from the Arthritis Society/Canadian Arthritis Network and a Scholar Award from the for reasons for having gout and the cause of gout flares, Michael Smith Foundation for Health Research. This study was supported by which is similar to a narrative described for U.K. patients an operating grant from the Canadian Initiative for Outcomes in Rheumatology with gout [32]. The behavior characterized as testing the Care and a team grant titled “PRECISION: Preventing Complications from Inflammatory Skin, Joint and Bowel Conditions” (THC number 135235) from waters in this study was predisposed by lacking knowledge the Canadian Institutes of Health Research. about medications or being unconvinced of one’s suscepti- bility to future gout attacks. When participants modified Availability of data and materials their diet or ULT, often gout symptoms reappeared and The datasets generated and/or analyzed during the present study are not would reinforce the need to be engaged in gout manage- publicly available, owing to the identifying information of study participants ment. This process of receiving physiological feedback in the interviews, but they are available from the corresponding author on reasonable request. when testing the waters may be a feature unique to pa- tients with gout, given that disease manifestations are fairly immediate. These findings emphasize the import- Authors’ contributions AH contributed to study conception and design, collection of data through ance of providing continual follow-up beyond the initial interviews, analysis and interpretation of data, and drafting critical revision of diagnosis when patients may be inclined to trial medica- the manuscript. SMC contributed to study design, interpretation of data, and tions or diet and allied healthcare providers are well- drafting and critical revision of the manuscript. KS and HKC contributed to study conception and design, interpretation of the data, and critical revision suited to supporting these key components of gout care. of the manuscript. SKR contributed to study design, interpretation of the There are strengths and limitations to this study that data, and critical revision of the manuscript. MADV contributed to study need to be considered. Strengths include the study design, conception and design, acquisition of the data, analysis and interpretation of data, and drafting and critical revision of the manuscript. All authors read because constructivist grounded theory uses techniques and approved the final manuscript. such as inductive analysis, constant comparison, and re- flexivity to ensure that results are representative of the pa- Ethics approval and consent to participate tient experience. Furthermore, we observed saturation in This study was reviewed and approved by the University of British Columbia our study through simultaneous data gathering and ana- Behavioural Research Ethics Board (H16-02061), and written consent was received from all study participants. lysis along with application of the constant comparative method. Limitations include the recruitment method, be- cause individuals were perhaps inclined to discuss factors Competing interests HKC reports receiving grants from AstraZeneca and consulting fees from that support gout management, given their participation Takeda, Selecta, and Horizon outside the submitted work. The other authors in a larger study evaluating a model of gout care and that declare that they have no competing interests. those enrolled in research studies generally display health- ier behaviors. The purposeful sampling strategy helped to compensate for this problem by selecting participants with Publisher’sNote Springer Nature remains neutral with regard to jurisdictional claims in both unmanaged and well-managed gout to represent a published maps and institutional affiliations. range of experiences. Another limitation is the recruit- ment being restricted to rheumatology practices, because Author details Faculty of Pharmaceutical Sciences, University of British Columbia, 2405 the majority of individuals with gout are treated in pri- Wesbrook Mall, Vancouver, BC V6T 1Z3, Canada. Arthritis Research Canada, mary care. However, detailed description allows the trans- 3 Richmond, BC, Canada. Collaboration for Outcomes Research and ferability of results, and the findings of this study are Evaluation, Vancouver, BC, Canada. University of British Columbia, School of Population & Public Health, Vancouver, BC, Canada. Faculty of Medicine, confirmed with qualitative publications derived from both Department of Medicine, Division of Rheumatology, University of British rheumatology and primary practices. 6 Columbia, Vancouver, BC, Canada. Department of Nutrition, Harvard T.H. Chan School of Public Health, Boston, MA, USA. Population Health Sciences Program, Graduate School of Arts and Sciences, Harvard University, Conclusions Cambridge, MA, USA. Division of Rheumatology, Allergy and Immunology, This study provides insight into factors that support op- Department of Medicine, Massachusetts General Hospital, Harvard Medical timal management and has constructed a framework for School, Boston, MA, USA. Howren et al. Arthritis Research & Therapy (2018) 20:110 Page 8 of 8 Received: 15 January 2018 Accepted: 26 April 2018 24. Hughes LD, Young A, Done D, Treharne G. A five item Compliance Questionnaire for Rheumatology (CQR5) can effectively predict low adherence to DMARDs in rheumatology 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. References 26. Leech BL. Asking questions: techniques for semistructured interviews. PS 1. Neogi T, Hunter DJ, Chaisson CE, Allensworth-Davies D, Zhang Y. Frequency Polit Sci Polit. 2002;35:665–8. and predictors of inappropriate management of recurrent gout attacks in a 27. Van Camp YPM, Bastiaens H, Van Royen P, Vermeire E. Qualitative evidence longitudinal study. J Rheumatol. 2006;33:104–9. in treatment adherence. In: Olson K, Young RA, Schultz IZ, editors. 2. Lottmann K, Chen X, Schadlich PK. Association between gout and all-cause Handbook of qualitative research for evidence-based practice. New York: as well as cardiovascular mortality: a systematic review. Curr Rheumatol Rep. Springer; 2016. p. 373–90. 2012;14:195–203. 28. Glaser B, Strauss A. The discovery of grounded theory: strategies for 3. Fisher MC, Rai SK, Lu N, Zhang Y, Choi HK. The unclosing premature qualitative research. Chicago: Aldine; 1967. mortality gap in gout: a general population-based study. Ann Rheum Dis. 29. Bowen GA. Naturalistic inquiry and the saturation concept: a research note. 2017;76:1289–94. Qual Res. 2008;8:137–52. 4. Rai SK, Avina-Zubieta JA, McCormick N, De Vera MA, Shojania K, Sayre EC, 30. Chandratre P, Mallen CD, Roddy E, Liddle J, Richardson J. “You want to get et al. The rising prevalence and incidence of gout in British Columbia, on with the rest of your life”: a qualitative study of health-related quality of Canada: population-based trends from 2000 to 2012. Semin Arthritis Rheum. life in gout. Clin Rheumatol. 2015;35:1197–205. 2017;46:451–6. 31. Harrold LR, Mazor KM, Velten S, Ockene IS, Yood RA. Patients and providers 5. De Vera MA, Marcotte G, Rai S, Galo JS, Bhole V. Medication adherence in view gout differently: a qualitative study. Chronic Illn. 2010;6:263–71. gout: a systematic review. Arthritis Care Res. 2014;66:1551–9. 32. Liddle J, Roddy E, Mallen CD, Hider SL, Prinjha S, Ziebland S, et al. Mapping 6. Cottrell E, Crabtree V, Edwards JJ, Roddy E. Improvement in the patients’ experiences from initial symptoms to gout diagnosis: a qualitative management of gout is vital and overdue: an audit from a UK primary care exploration. BMJ Open. 2015;5:e008323. medical practice. BMC Fam Pract. 2013;14:170. 33. Lindsay K, Gow P, Vanderpyl J, Logo P, Dalbeth N. The experience and 7. Singh JA, Hodges JS, Toscano JP, Asch SM. Quality of care for gout in the impact of living with gout: a study of men with chronic gout using a US needs improvement. Arthritis Rheum. 2007;57:822–9. qualitative grounded theory approach. J Clin Rheumatol. 2011;17:1–6. 8. Roddy E, Zhang W, Doherty M. Concordance of the management of 34. Martini N, Bryant L, Te Karu L, Aho L, Chan R, Miao J, et al. Living with gout chronic gout in a UK primary-care population with the EULAR gout in New Zealand: an exploratory study into people's knowledge about the recommendations. Ann Rheum Dis. 2007;66:1311–5. disease and its treatment. J Clin Rheumatol. 2012;18:125–9. 9. Doherty M, Jansen TL, Nuki G, Pascual E, Perez-Ruiz F, Punzi L, et al. Gout: 35. Richardson JC, Liddle J, Mallen CD, Roddy E, Hider S, Prinjha S, et al. A joint why is this curable disease so seldom cured? Ann Rheum Dis. 2012;71: effort over a period of time: factors affecting use of urate-lowering therapy 1765–70. for long-term treatment of gout. BMC Musculoskelet Disord. 2016;17:249. 10. Wise E, Khanna PP. The impact of gout guidelines. Curr Opin Rheumatol. 36. Richardson JC, Liddle J, Mallen CD, Roddy E, Prinjha S, Ziebland S, et al. 2015;27:225–30. “Why me? I don’t fit the mould ... I am a freak of nature”: a qualitative study 11. Rees F, Jenkins W, Doherty M. Patients with gout adhere to curative of women’s experience of gout. BMC Womens Health. 2015;15:122. treatment if informed appropriately: proof-of-concept observational study. 37. Singh JA. The impact of gout on patient's lives: a study of African-American Ann Rheum Dis. 2012;72:826–30. and Caucasian men and women with gout. Arthritis Res Ther. 2014;16:R132. 12. Goldfien R, Pressman A, Jacobson A, Ng M, Avins A. A pharmacist-staffed, 38. Singh JA. Challenges faced by patients in gout treatment: a qualitative virtual gout management clinic for achieving target serum uric acid levels: a study. J Clin Rheumatol. 2014;20:172–4. randomized clinical trial. Perm J. 2016;20:18–23. 39. Spencer K, Carr A, Doherty M. Patient and provider barriers to effective 13. Goldfien RD, Ng MS, Yip G, Hwe A, Jacobson A, Pressman A, et al. Effectiveness management of gout in general practice: a qualitative study. Ann Rheum of a pharmacist-based gout care management programme in a large Dis. 2012;71:1490–5. integrated health plan: results from a pilot study. BMJ Open. 2014;4:e003627. 40. Te Karu L, Bryant L, Elley CR. Maori experiences and perceptions of gout 14. Green J, Britten N. Qualitative research and evidence based medicine. BMJ. and its treatment: a kaupapa Maori qualitative study. J Prim Health Care. 1998;316:1230–2. 2013;5:214–22. 15. Rai SK, Choi H, Choi SHJ, Townsend A, Shojania K, De Vera M. Key barriers to 41. Vaccher S, Kannangara DR, Baysari MT, Reath J, Zwar N, Williams KM, et al. gout care: a systematic review and thematic synthesis of qualitative studies. Barriers to care in gout: from prescriber to patient. J Rheumatol. 2016;43: Rheumatology (Oxford). 2018; https://doi.org/10.1093/rheumatology/kex530. 144–9. 16. Singh JA. Facilitators and barriers to adherence to urate-lowering 42. van Onna M, Hinsenveld E, de Vries H, Boonen A. Health literacy in patients therapy in African-Americans with gout: a qualitative study. Arthritis Res dealing with gout: a qualitative study. Clin Rheumatol. 2015;34:1599–603. Ther. 2014;16:R82. 43. Horne R, Weinman J, Barber N, Elliott R, Morgan M. Concordance, 17. Singh JA, Herbey I, Bharat A, Dinnella JE, Pullman-Mooar S, Eisen S, et al. adherence and compliance in medicine taking: report for the National Gout self-management in African-American veterans: a qualitative Coordinating Centre for NHS Service Delivery and Organisation R&D exploration of challenges and solutions from patients’ perspectives. Arthritis (NCCSDO). London: NCCDSO; 2005. Care Res. 2017;69:1724–32. 44. Horne R, Weinman J. Patients’ beliefs about prescribed medicines and their 18. De Vera MA, Howren A, Tsao N, Choi H, Kydd A, Friesen K, et al. THU0442 role in adherence to treatment in chronic physical illness. J Psychosom Res. eHealth supported collaborative care model for gout involving 1999;47:555–67. rheumatology, pharmacy, and dietetics: proof of concept observational 45. Morse JM. What use is it anyway? Considering modes of application and study [abstract]. Ann Rheum Dis. 2017;76(Suppl 2):374–375. contributions of qualitative inquiry. In: Olson K, Young RA, Schultz IZ, 19. Charmaz K. Constructing grounded theory. 2nd ed. London: Sage; 2014. editors. Handbook of qualitative health research for evidence-based 20. Sandelowski M. Whatever happened to qualitative description? Res Nurs practice. New York: Springer; 2016. p. 429–40. Health. 2000;23:334–40. 21. de Klerk E, van der Heijde D, Landewe R, van der Tempel H, van der Linden S. The compliance-questionnaire-rheumatology compared with electronic medication 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 with antirheumatic drug therapy. J Rheumatol. 1999;26:2635–41. 23. Hughes LD, Done J, Young A. A 5 item version of the Compliance Questionnaire for Rheumatology (CQR5) successfully identifies low adherence to DMARDs. BMC Musculoskelet Disord. 2013;14:286. http://www.deepdyve.com/assets/images/DeepDyve-Logo-lg.png Arthritis Research & Therapy Springer Journals

How patients with gout become engaged in disease management: a constructivist grounded theory study

Free
8 pages
Loading next page...
 
/lp/springer_journal/how-patients-with-gout-become-engaged-in-disease-management-a-X9iKid7ZYR
Publisher
BioMed Central
Copyright
Copyright © 2018 by The Author(s).
Subject
Medicine & Public Health; Rheumatology; Orthopedics
eISSN
1478-6362
D.O.I.
10.1186/s13075-018-1608-x
Publisher site
See Article on Publisher Site

Abstract

Background: Prior qualitative research on gout has focused primarily on barriers to disease management. Our objective was to use patients’ perspectives to construct an explanatory framework to understand how patients become 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 an eHealth-supported collaborative care model for gout involving rheumatology, pharmacy, and dietetics. Semistructured interviews were used. We analyzed transcripts using principles of constructivist grounded theory involving initial coding, 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. The analysis resulted in the construction of three themes as well as a framework describing the dynamically linked themes on (1) processing the diagnosis and management of gout, (2) supporting management of gout, and (3) interfering with management of gout. In this framework, patients with gout transition between each theme in the process of becoming engaged in the management of their gout and may represent potential opportunities for healthcare intervention. Conclusions: Findings derived from this study show that becoming engaged in gout management is a dynamic process whereby patients with gout experience factors that interfere with gout management, process their disease and its management, and develop the practical and perceptual skills necessary to manage their gout. By understanding this process, healthcare providers can identify points to adapt care delivery and thereby improve health outcomes. Keywords: Gout, Qualitative research, Grounded theory, Disease management Background optimizing care delivery and improving outcomes for pa- Despite the availability of effective medication therapy in tients with gout [9, 10], including models of care delivery the form of urate-lowering therapy (ULT), studies have involving allied healthcare providers such as rheumatol- consistently reported suboptimal outcomes, including ogy nurses [11] and pharmacists [12, 13]. repeated flares [1], increased cardiovascular mortality Aside from novel models of care, also important to [2], and excess all-cause mortality [2, 3], for individuals improving the quality of care for gout is an understand- with gout, the most common inflammatory arthritis in ing of the patient’s perspective, particularly through men [4]. Factors contributing to suboptimal patient applying qualitative inquiry because this has the capacity outcomes include poor adherence to ULT, with rates to elucidate the discordance between evidence-based ranging from 10% to 46% [5], and insufficient quality of practice and the reality of managing gout [14]. Qualita- care [6–8]. As such, efforts are presently focused on tive research in gout has been published in the United States, the United Kingdom, Australia, New Zealand, * Correspondence: mdevera@mail.ubc.ca and the Netherlands, with a recent thematic synthesis by Faculty of Pharmaceutical Sciences, University of British Columbia, 2405 our group showing that studies have primarily reported Wesbrook Mall, Vancouver, BC V6T 1Z3, Canada barriers to optimal management of gout from patients’ Arthritis Research Canada, Richmond, BC, Canada Full 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 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the 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 Page 2 of 8 as well as providers’ perspectives, primarily situated within We applied the criteria of completion of a minimum of traditional care delivery models [15]. Although a 2014 6 months of follow-up in the Virtual Gout Study with at study evaluated factors that influence ULT adherence [16] least one pharmacist and one dietitian consult, able to and a 2017 study explored solutions for self-management provide informed consent, having access to a phone, and among African American male veterans [17], the findings able to comprehend and speak English. are limited in scope with respect to a focus on medication use [16] and a distinct patient sample [17]. Current know- Data gathering ledge gaps include how patients with gout can best be Semistructured interviews, using adaptable probes and supported in the context of receiving care. As such, to prompts, were conducted with participants by a single inform optimal caredeliverythrough a patient-centered author (AH) over the telephone. Each interview was lens, we aimed to explore individual experiences with gout started by briefing the participant on the subject matter to understand how they become engaged in the manage- and purpose and situating the participant as the expert ment of gout in the context of receiving care. early in the interview [25, 26]. A topic guide with open- ended questions was developed and revised by study Methods authors (AH, SMC, SKR, MADV), and the interview Study design was focused on exploring participants’ experiences with We conducted a qualitative study nested within the gout before and during the Virtual Gout Study, manage- Virtual Gout Study, a longitudinal proof-of-concept ment of gout, perceptions of disease activity, and beliefs study evaluating an eHealth-supported collaborative care and behaviors surrounding gout medications. Interviews model involving rheumatology, pharmacy, and dietetics were recorded using a WS-853 digital voice recorder for gout in British Columbia, Canada [18]. In brief, in (Olympus, Center Valley, PA, USA). Professional this novel decentralized model, eight community transcription service providers transcribed each audio- rheumatologists’ electronic medical records (EMR) for recorded interview. consented participants with gout were shared with a study pharmacist and study dietitian who provided con- Analysis sultations, respectively, via telephone. As such, this We followed three main steps of the coding process of shared EMR supported remote communication and col- constructivist grounded theory: initial coding, focused laboration among health professionals. The descriptive coding and categorizing, and theoretical coding [19]. For qualitative study was informed by constructivist the initial coding phase, we conducted line-by-line coding. grounded theory, an approach that is well suited to the Focused coding narrowed the scope of the qualitative ana- study of social processes and gaining an in-depth under- lysis by identifying initial codes that held analytical signifi- standing of participants’ lived experiences [19, 20]. cance or were repetitive. Last, theoretical coding was done with the aim of interpreting relationships between con- Participant recruitment structed categories [19]. On the basis of emerging analysis We invited individuals from the Virtual Gout Study, as well as prior knowledge that poor ULT adherence [5] which included patients with confirmed gout who were and management [6–8] underlie suboptimal health out- seen in one of four participating rheumatology practices comes in gout, we explored previous analytic constructs and had at least one flare in the past year and serum uric that pertain to treatment adherence to inform the acid (SUA) level > 360 μmol/L in the past 2 months (at emerging theoretical codes [27]. Analytical techniques time of recruitment) to participate in our qualitative such as the constant comparative method and memo- study. According to the Virtual Gout Study protocol, writing were applied throughout [19, 28]. Data gathering participants (1) were seen by their rheumatologists on and analysis were carried out in an iterative process such an as-needed basis; (2) had monthly (or as-needed) tele- that participants were interviewed until saturation was phone consults with the study pharmacist, including achieved. This is the point where no new insights into the medication reviews (e.g., discussion of ULT dosage, constructed categories and themes emerged [29]. We used medication adherence, discontinuation of unnecessary NVivo 11 (QSR International, Doncaster, Australia) for all medications), and discussion of laboratory test results; analyses. This study was reviewed and approved by the and (3) one telephone consult with the study dietitian University of British Columbia Behavioural Research regarding dietary recommendations for gout. To explore Ethics Board (H16–02061). a range of experiences, we purposefully sampled inter- view participants according to SUA level and self- Results reported adherence using the five-item version of the Twelve participants with gout (ten males, two females; Compliance Questionnaire for Rheumatology (CQR5) mean age, 66.5 ± 13.3 years) were interviewed over the [21–24], as measured in the Virtual Gout Study. telephone. Mean SUA as recorded in the Virtual Gout Howren et al. Arthritis Research & Therapy (2018) 20:110 Page 3 of 8 Study nearest the time of interview was 387 μmol/L (± which participants mentioned instances when they 110 μmol/L). Six participants had SUA > 360 μmol/L trialed their diet or modified their medications. This and/or were classified as nonadherent by the CQR5. All self-experimentation often occurred during a period participants were prescribed ULT at the time of the when participants reached a level of comfort with gout interview. The average duration of the interviews was management or an asymptomatic period. For one par- 33 minutes. The analysis resulted in the construction of ticipant, concern about side effects of gout medications three themes: (1) processing the diagnosis and manage- preceded modification to medications. ment of gout, (2) supporting management of gout, and (3) interfering with management of gout. In addition, we Theme 2: supporting management of gout used an explanatory framework to illustrate the process The second theme of supporting management of gout of becoming engaged in gout management. comprised six conceptual categories: (1) being organized, (2) identifying motivation, (3) taking control, (4) seeing a Themes difference, (5) resonating importance of gout medica- Theme 1: processing the diagnosis and management of tions, and (6) developing acceptance. A common sup- gout porter of managing gout that participants identified was The first theme, processing the diagnosis and manage- a sense of being organized, whether an inherent or ment of gout, which encompassed how participants acquired behavior. Some participants were taking several learn to navigate their diagnosis, comprised conceptual medications for other conditions, and therefore an categories of: (1) adapting to gout, (2) searching for emphasis was placed on the necessity of taking and reason, and (3) testing the waters (Table 1). Adapting to scheduling their treatments. Many participants discussed gout describes how participants found ways to modify how taking their gout medications had become a routine their lifestyles, including practical changes, acclimatizing integrated into their daily schedule or was paired with to the pain, and modifying diet. Practical changes in- an already established daily activity. cluded participants adjusting their activity levels on the The category identifying motivation describes the rea- basis of disease activity and making accommodations (e. son why participants are compelled to take their gout g., footwear, aids/devices), whereas dietary modifications medications. Most participants stated that they contin- included identifying and avoiding personal triggers such ued to take their medications to avoid the immense pain as acidic foods, alcohol, and seafood. Searching for experienced during gout flares. As such, it seems that reason describes the process shared by some participants most participants had made the connection between ad- in which they sought to find reasons for having gout, hering to daily ULT and the prevention of future pain such as questioning the relationship between diet and a from gout. A few participants mentioned the need to get high SUA or undergoing the emotional experience of back to day-to-day activities to improve their health as a questioning why they have gout and why they have to significant motivator as well as to avoid visits to the endure such pain. Last, testing the waters is a process in hospital or their physician’s office. Taking control refers to participants having an active Table 1 Conceptual categories and example quotations from role in managing their gout. Participants relayed a sense participants for theme 1 of personal responsibility such as being proactive and Theme 1: Processing the diagnosis and management of gout taking initiative, acknowledging the importance of know- Conceptual category Example quotations ing one’s own body (e.g., triggers of gout flares), and Adapting to gout “I’m very, I’m very careful for what I am eating or, feeling that “my health is my concern” (participant 5, or drinking.” male). Also mentioned by participants was being (Participant 5, male) proactive in terms of searching for information about “You plan your day around how you feel.” (Participant 11, male) gout online and requesting an appointment with a spe- cialist. In addition, some participants mentioned having Searching for reason “I don’t know whether it was because I was particularly dehydrated when I took the blood a personal plan to deal with future gout flares, including test or maybe I’d consumed more of the triggers knowing when to take colchicine, which appeared to es- leading up to it.” (Participant 8, male) tablish confidence in managing their disease. “If I have a, a gout what’s this, a flared up, I always have tears in my eyes, why me, why me, The category seeing a difference refers to moments I ask myself, why me.” (Participant 5, male) during treatment in which participants realized the role Testing the waters “Because I hadn’t been having flare ups, I, I felt I that medications and diet play in modifying their gout could indulge a little bit more in some of the foods symptoms, such as when stopping or initiating gout that I knew that were triggers.” (Participant 8, male) medications and then noticing a change in disease activ- “So I took it [allopurinol] every other day for a while and I held my own and then I tried every second day ity. The process of altering ULT or diet and observing a for maybe a couple of weeks.” (Participant 7, female) reaction describes a self-initiated learning experience for Howren et al. Arthritis Research & Therapy (2018) 20:110 Page 4 of 8 Table 2 Conceptual categories and example quotations from Table 2 Conceptual categories and example quotations from participants for themes 2 and 3 participants for themes 2 and 3 (Continued) Theme 2: Supporting management of gout where you know like I’m, I have my health back that I had in my youth but that’s Conceptual category Example quotations a dream.” (Participant 12, male) Being organized “Well, I’m on other medications, so I’ve got “Well if he says women don’t have gout, a very regimented schedule when I take a what’s this in my toes and why did they medication.” (Participant 1, male) give me shots of whatever at the hospital “It’s like brushing my teeth now, I gotta do and why did they extract what they told it.” (Participant 2, male) me was tophi.” (Participant 7, female) Identifying motivation “If I don’t take my medication, I don’t want Forgetting medications “Not on purpose. I, I go away for a weekend to get sick, right, because I’ve got to take for example and leave it at home, just care of my family and my husband and because I’d forgotten it.” (Participant 9, male) my housework too… and then I do my “Well if I do, I just take it a little bit later, volunteering too.” (Participant 3, female) that’s all.” (Participant 10, male) “Remembering what it’s like to have difficulty getting, getting your shoe on and walking Lacking knowledge/being “Well, I only took it periodically, maybe for around.” (Participant 9, male) misinformed a week and my gout rescinded. So I didn’t see any sense in taking it again.” Taking control “I mean the bottom line is I’m the patient (Participant 1, male) and know my body so ultimately it becomes “Yeah, it’s, because you know just my my responsibility.” (Participant 12, male) understanding of, of my medications, I took “then in my you know research online, I did it wrong.” (Participant 5, male) a little bit more, I discovered a few more things and what the, what the causes were.” (Participant 8, male) participants. From another perspective, a participant Seeing a difference “Now it’s down to about 350, 360, which is with high SUA or gout flares noticed the reduction of obviously a huge difference taking the symptoms after starting allopurinol: “There was a drastic medication.” (Participant 2, male) “Well, it was about a year after but yeah, improvement after 6 months and then gradual improve- it (gout) came back, and I stopped it ments ever since” (participant 1, male). (medication) myself. I, I shouldn’t have. Related to this is the category resonating importance of I probably should just have continued, you know.” (Participant 6, male) gout medications, which details how participants attri- Resonating importance “I really had the suspicion the way in which bute the improvement in their gout symptoms as a of gout medications I’ve, I’ve reacted to the sole, solely to the direct result of their gout medications. Consequently, medication change.” (Participant 9, male) the majority of participants expressed being committed “The lesson I’ve learnt is not to stop the allopurinol.” (Participant 6, male) to taking their medication and shared the common sentiment of “I won’t stop taking those medicines” Developing acceptance “[rheumatologist] said it’s probably taken me 30 years to get this bad so it’s not (participant 5, male). gonna go away in five minutes.” Several participants with gout remarked on developing (Participant 11, male) acceptance in terms of medications and the prognosis of “I mean you know like you wake up one day and you’ve got, got this funny pain in gout. Developing acceptance describes the hurdles over- your body, you go to see the doctor and come by participants toward being in a position to ultimately you go through the process.” actively manage their gout. Some participants discussed (Participant 12, male) the acceptance of medications such as accepting the side Theme 3: Interfering with management of gout effects and the longevity of ULT. This encompasses Conceptual category Example quotations knowing the potential side effects and ultimately Disliking taking medication “Idon’t particularly like relying on medication deciding that the benefits of medication outweigh the in general so I guess it’s just personal philosophy.” potential for adverse reactions. Although a general re- (Participant 8, male) “I ended up at you know taking more and sistance to taking medications also seems to be involved more medications to the stage that it, I in this process, as one participant reflected on his deci- wasn’t really comfortable with that.” sion making, “I don’t wanna take it, but I have no choice. (Participant 9, male) I have to take it every day” (participant 5, male). Fearing side effects “And I guess not knowing, not knowing what Additional example quotations pertaining to this theme the medication’s really gonna do say 10 years from now. Obviously they don’tmake are provided in Table 2. medications to kill you, right?” (Participant 2, male) Theme 3: interfering with management of gout “But then again you know the side effect and all that is I’msoscared.” (Participant 3, female) The third theme, interfering with management of gout, Affecting personal identity “You know like if I had, if I had any choice in describes challenges that participants with gout encoun- the matter, I’d, I’d rather be in a position ter. Three of the five conceptual categories, disliking Howren et al. Arthritis Research & Therapy (2018) 20:110 Page 5 of 8 taking medication, fearing side effects, and affecting purpose” (participant 9, male), and another described personal identity, represent perceptual barriers, whereas how, for him, “It’s just not forgetting, it’s just ah, just be- the last two categories, forgetting medications and lack- ing lazy” (participant 2, male). For one participant, for- ing knowledge or being misinformed, represent practical getting seemed to be connected to lacking knowledge, barriers (Table 2). with the belief that ULT is “built up after, you know, a The conceptual category disliking taking medications week of taking it straight, missing it one day is probably captures a general aversion of some participants toward not going to be detrimental, right?” (participant 2, male). consuming medications. Many expressed feeling uncom- An additional frequent barrier voiced by participants fortable with taking medications, especially daily medica- was insufficient education about gout or the medications tions or a number of different medications, whereas being prescribed. Narratives expressed by participants another expressed how one can “just have a mental included the misconception of thinking there is no block in your head about taking medications” (partici- “cure” for gout, believing that ULT has a cumulative pant 2, male). effect to prevent against future gout attacks, and misun- Four participants expressed fearing side effects of their derstanding medication directions. A common experi- gout medications, such as how the medications could ence shared by participants was the decision to harm their kidneys. discontinue their ULT early because they seemed uncon- Affecting personal identity describes a phenomenon in vinced of the need for daily medication and were which some participants undergo a process of self- unaware of the preventive nature of ULT. reflection and may feel reluctance to accepting their diagnosis. Indeed, a disposition toward taking daily ULT Framework for understanding engagement in gout can be fueled by the reluctance to accept being management diagnosed with a chronic disease. For some participants, The relationship between three themes (interfering with this stems from having misconceptions about gout or management of gout [theme 3], processing the diagnosis knowledge of the misleading stereotypes associated with and management of gout [theme 1], and supporting gout. For other participants, being diagnosed with a management of gout [theme 2]) is presented in Fig. 1, chronic condition prompted reflection on their own age which shows that becoming engaged in the management and health status. of gout is a dynamic process. It is important to note the The final two categories identified practical barriers to position of the themes in the process of becoming optimal gout management, specifically forgetting medica- engaged in the management of gout: processing the tions and lacking knowledge/being misinformed. One par- diagnosis and management of gout is at the center of the ticipant shared how forgetting allopurinol was “not on spectrum, mediating the transition between interfering Fig. 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. Beneath each theme are boxes containing the corresponding categories. Solid black arrows within each theme depict relationships between categories Howren et al. Arthritis Research & Therapy (2018) 20:110 Page 6 of 8 with management of gout and supporting management of Although direct elucidation of supporting factors is in- gout. Through processing the diagnosis and management frequent in prior literature, a review of available data re- of gout, participants gain an understanding of the causes vealed content related to three of our categories: being of gout and discover methods by which to adapt to it. organized [16, 17, 31, 34, 41, 42], identifying motivation Within processing the diagnosis is testing the waters, [16, 17, 31–33, 35, 42], and taking control [17, 32, 41]. which, based on the participants’ accounts, can move Our present study contributes to the literature by them toward either supporting or interfering with constructing and comprehensively describing these adherence to treatment. Furthermore, the categories categories. testing the waters and searching for reason, located A unique finding in this study was the integrated rela- within the theme processing the diagnosis and manage- tionship among three categories—developing acceptance, ment of gout, are connected, as demonstrated by a seeing a difference, and resonating importance of gout participant who mentioned, “You’re trying to figure what medications—constructed within the theme supporting are you doing, what are you intaking in your system,” management of gout. These findings demonstrate the and the curiosity of dietary triggers caused the partici- power of patient perceptions regarding illness and pant to “test it for a while” (participant 2, male). Intrin- medications within the process of increasing engage- sic processes closely linked to participants developing ment in the management of gout [43]. Moreover, this acceptance are seeing a difference and understanding the represents an opportunity for healthcare providers resonating importance of gout medications. In noticing a because they can encourage this resolution to develop change in their gout activity, many attributed that acceptance by reviewing with patients their SUA over change to their medications, thereby reinforcing the time, tracking gout activity, and discussing gout importance of ULT. The combination of noticing an pathogenesis. improvement in their health and taking ULT ultimately Along with a comprehensive description of elements supported the development of acceptance in terms of that support gout management, key to our study is the actively managing their gout. development of an explanatory framework for conveying how patients with gout become engaged in managing Discussion their disease. Only two previous studies have described We conducted a qualitative study using a constructivist frameworks for understanding patients’ experiences with grounded theory approach to understand patients’ gout [17, 35]. In the first study, Richardson et al. experiences with gout and how patients become engaged reported determinants of ULT uptake and developed a in the management of gout within the context of receiv- framework describing ULT acceptance as dynamic, thus ing care. Findings include one theme describing the ex- providing support for continual follow-up for patients perience of gout, specifically processing the diagnosis with gout [35]. This study demonstrated findings similar and management of gout, as well as perceptual and to those in our study regarding how noticing a difference practical factors that influence the management of gout, in gout symptoms can positively influence disease man- which are distinguished as the themes supporting agement [35]. The second study, by Singh et al., was fo- management of gout and interfering with management of cused on the experiences of African American male gout. Furthermore, in exploring the relationships be- veterans with gout who were adherent to ULT and de- tween study themes, we constructed an explanatory ductively conceptualized self-management using an framework that explains how becoming engaged in gout existing framework, the Health Belief Model [17]. An management is a dynamic process whereby patients may advantage of the inductive framework constructed in our transition through interfering with management of gout study is that findings are drawn directly from the pa- to processing the diagnosis and management of gout to tients’ perspectives and expand on the current literature supporting management of gout. As such, an implication regarding gout management to thereby impart health- of these findings is informing how healthcare providers care providers with a basis for understanding the unique can mediate this process to improve care delivery and perceptions held by patients with gout. As patients enter health outcomes. the healthcare system, they hold beliefs that undoubtedly A considerable portion of prior qualitative research in influence the impending course of management [27, 44], gout has described barriers to adherence and manage- and as such, having healthcare providers attuned to ment [16, 17, 30–42]; however, understanding of the these perceptual and practical factors along the factors that support optimal gout management is incom- continuum of gout management will inform opportun- plete. We interviewed participants enrolled in a study of ities to optimize care delivery. For example, when the an eHealth-supported collaborative care intervention for behavior of taking control of gout management appears gout, which gave us an opportunity to understand the absent, healthcare providers can assist patients by pro- determinants that support management of gout. viding a thorough plan for medication-taking and coping Howren et al. Arthritis Research & Therapy (2018) 20:110 Page 7 of 8 with gout flares, as well as encouraging patients to use elucidating the process of becoming engaged in gout recommended resources. management. By understanding the entire continuum of A unique feature of our qualitative study is that it is patient engagement in gout management, healthcare nested within an eHealth-supported collaborative care providers, including rheumatologists as well as allied model for gout, which is well-suited to our aim of under- health professionals, can adapt care delivery to patients standing how patients with gout can become engaged in who require support in specific domains [45]. managing their disease within the context of receiving care. In particular, this study adds to the comprehension Funding AH was a recipient of a Canadian Institutes of Health Research Frederick of the patient experience with gout by constructing a Banting and Charles Best Canada Graduate Scholarship – Master’s Program. theme to describe the processing of the diagnosis and man- MADV holds a Canada Research Chair in Medication Adherence, Utilization, agement of gout. During the diagnosis, patients may search and Outcomes and is a recipient of a Network Scholar Award from the Arthritis Society/Canadian Arthritis Network and a Scholar Award from the for reasons for having gout and the cause of gout flares, Michael Smith Foundation for Health Research. This study was supported by which is similar to a narrative described for U.K. patients an operating grant from the Canadian Initiative for Outcomes in Rheumatology with gout [32]. The behavior characterized as testing the Care and a team grant titled “PRECISION: Preventing Complications from Inflammatory Skin, Joint and Bowel Conditions” (THC number 135235) from waters in this study was predisposed by lacking knowledge the Canadian Institutes of Health Research. about medications or being unconvinced of one’s suscepti- bility to future gout attacks. When participants modified Availability of data and materials their diet or ULT, often gout symptoms reappeared and The datasets generated and/or analyzed during the present study are not would reinforce the need to be engaged in gout manage- publicly available, owing to the identifying information of study participants ment. This process of receiving physiological feedback in the interviews, but they are available from the corresponding author on reasonable request. when testing the waters may be a feature unique to pa- tients with gout, given that disease manifestations are fairly immediate. These findings emphasize the import- Authors’ contributions AH contributed to study conception and design, collection of data through ance of providing continual follow-up beyond the initial interviews, analysis and interpretation of data, and drafting critical revision of diagnosis when patients may be inclined to trial medica- the manuscript. SMC contributed to study design, interpretation of data, and tions or diet and allied healthcare providers are well- drafting and critical revision of the manuscript. KS and HKC contributed to study conception and design, interpretation of the data, and critical revision suited to supporting these key components of gout care. of the manuscript. SKR contributed to study design, interpretation of the There are strengths and limitations to this study that data, and critical revision of the manuscript. MADV contributed to study need to be considered. Strengths include the study design, conception and design, acquisition of the data, analysis and interpretation of data, and drafting and critical revision of the manuscript. All authors read because constructivist grounded theory uses techniques and approved the final manuscript. such as inductive analysis, constant comparison, and re- flexivity to ensure that results are representative of the pa- Ethics approval and consent to participate tient experience. Furthermore, we observed saturation in This study was reviewed and approved by the University of British Columbia our study through simultaneous data gathering and ana- Behavioural Research Ethics Board (H16-02061), and written consent was received from all study participants. lysis along with application of the constant comparative method. Limitations include the recruitment method, be- cause individuals were perhaps inclined to discuss factors Competing interests HKC reports receiving grants from AstraZeneca and consulting fees from that support gout management, given their participation Takeda, Selecta, and Horizon outside the submitted work. The other authors in a larger study evaluating a model of gout care and that declare that they have no competing interests. those enrolled in research studies generally display health- ier behaviors. The purposeful sampling strategy helped to compensate for this problem by selecting participants with Publisher’sNote Springer Nature remains neutral with regard to jurisdictional claims in both unmanaged and well-managed gout to represent a published maps and institutional affiliations. range of experiences. Another limitation is the recruit- ment being restricted to rheumatology practices, because Author details Faculty of Pharmaceutical Sciences, University of British Columbia, 2405 the majority of individuals with gout are treated in pri- Wesbrook Mall, Vancouver, BC V6T 1Z3, Canada. Arthritis Research Canada, mary care. However, detailed description allows the trans- 3 Richmond, BC, Canada. Collaboration for Outcomes Research and ferability of results, and the findings of this study are Evaluation, Vancouver, BC, Canada. University of British Columbia, School of Population & Public Health, Vancouver, BC, Canada. Faculty of Medicine, confirmed with qualitative publications derived from both Department of Medicine, Division of Rheumatology, University of British rheumatology and primary practices. 6 Columbia, Vancouver, BC, Canada. Department of Nutrition, Harvard T.H. Chan School of Public Health, Boston, MA, USA. Population Health Sciences Program, Graduate School of Arts and Sciences, Harvard University, Conclusions Cambridge, MA, USA. Division of Rheumatology, Allergy and Immunology, This study provides insight into factors that support op- Department of Medicine, Massachusetts General Hospital, Harvard Medical timal management and has constructed a framework for School, Boston, MA, USA. Howren et al. Arthritis Research & Therapy (2018) 20:110 Page 8 of 8 Received: 15 January 2018 Accepted: 26 April 2018 24. Hughes LD, Young A, Done D, Treharne G. A five item Compliance Questionnaire for Rheumatology (CQR5) can effectively predict low adherence to DMARDs in rheumatology 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. References 26. Leech BL. Asking questions: techniques for semistructured interviews. PS 1. Neogi T, Hunter DJ, Chaisson CE, Allensworth-Davies D, Zhang Y. Frequency Polit Sci Polit. 2002;35:665–8. and predictors of inappropriate management of recurrent gout attacks in a 27. Van Camp YPM, Bastiaens H, Van Royen P, Vermeire E. Qualitative evidence longitudinal study. J Rheumatol. 2006;33:104–9. in treatment adherence. In: Olson K, Young RA, Schultz IZ, editors. 2. Lottmann K, Chen X, Schadlich PK. Association between gout and all-cause Handbook of qualitative research for evidence-based practice. New York: as well as cardiovascular mortality: a systematic review. Curr Rheumatol Rep. Springer; 2016. p. 373–90. 2012;14:195–203. 28. Glaser B, Strauss A. The discovery of grounded theory: strategies for 3. Fisher MC, Rai SK, Lu N, Zhang Y, Choi HK. The unclosing premature qualitative research. Chicago: Aldine; 1967. mortality gap in gout: a general population-based study. Ann Rheum Dis. 29. Bowen GA. Naturalistic inquiry and the saturation concept: a research note. 2017;76:1289–94. Qual Res. 2008;8:137–52. 4. Rai SK, Avina-Zubieta JA, McCormick N, De Vera MA, Shojania K, Sayre EC, 30. Chandratre P, Mallen CD, Roddy E, Liddle J, Richardson J. “You want to get et al. The rising prevalence and incidence of gout in British Columbia, on with the rest of your life”: a qualitative study of health-related quality of Canada: population-based trends from 2000 to 2012. Semin Arthritis Rheum. life in gout. Clin Rheumatol. 2015;35:1197–205. 2017;46:451–6. 31. Harrold LR, Mazor KM, Velten S, Ockene IS, Yood RA. Patients and providers 5. De Vera MA, Marcotte G, Rai S, Galo JS, Bhole V. Medication adherence in view gout differently: a qualitative study. Chronic Illn. 2010;6:263–71. gout: a systematic review. Arthritis Care Res. 2014;66:1551–9. 32. Liddle J, Roddy E, Mallen CD, Hider SL, Prinjha S, Ziebland S, et al. Mapping 6. Cottrell E, Crabtree V, Edwards JJ, Roddy E. Improvement in the patients’ experiences from initial symptoms to gout diagnosis: a qualitative management of gout is vital and overdue: an audit from a UK primary care exploration. BMJ Open. 2015;5:e008323. medical practice. BMC Fam Pract. 2013;14:170. 33. Lindsay K, Gow P, Vanderpyl J, Logo P, Dalbeth N. The experience and 7. Singh JA, Hodges JS, Toscano JP, Asch SM. Quality of care for gout in the impact of living with gout: a study of men with chronic gout using a US needs improvement. Arthritis Rheum. 2007;57:822–9. qualitative grounded theory approach. J Clin Rheumatol. 2011;17:1–6. 8. Roddy E, Zhang W, Doherty M. Concordance of the management of 34. Martini N, Bryant L, Te Karu L, Aho L, Chan R, Miao J, et al. Living with gout chronic gout in a UK primary-care population with the EULAR gout in New Zealand: an exploratory study into people's knowledge about the recommendations. Ann Rheum Dis. 2007;66:1311–5. disease and its treatment. J Clin Rheumatol. 2012;18:125–9. 9. Doherty M, Jansen TL, Nuki G, Pascual E, Perez-Ruiz F, Punzi L, et al. Gout: 35. Richardson JC, Liddle J, Mallen CD, Roddy E, Hider S, Prinjha S, et al. A joint why is this curable disease so seldom cured? Ann Rheum Dis. 2012;71: effort over a period of time: factors affecting use of urate-lowering therapy 1765–70. for long-term treatment of gout. BMC Musculoskelet Disord. 2016;17:249. 10. Wise E, Khanna PP. The impact of gout guidelines. Curr Opin Rheumatol. 36. Richardson JC, Liddle J, Mallen CD, Roddy E, Prinjha S, Ziebland S, et al. 2015;27:225–30. “Why me? I don’t fit the mould ... I am a freak of nature”: a qualitative study 11. Rees F, Jenkins W, Doherty M. Patients with gout adhere to curative of women’s experience of gout. BMC Womens Health. 2015;15:122. treatment if informed appropriately: proof-of-concept observational study. 37. Singh JA. The impact of gout on patient's lives: a study of African-American Ann Rheum Dis. 2012;72:826–30. and Caucasian men and women with gout. Arthritis Res Ther. 2014;16:R132. 12. Goldfien R, Pressman A, Jacobson A, Ng M, Avins A. A pharmacist-staffed, 38. Singh JA. Challenges faced by patients in gout treatment: a qualitative virtual gout management clinic for achieving target serum uric acid levels: a study. J Clin Rheumatol. 2014;20:172–4. randomized clinical trial. Perm J. 2016;20:18–23. 39. Spencer K, Carr A, Doherty M. Patient and provider barriers to effective 13. Goldfien RD, Ng MS, Yip G, Hwe A, Jacobson A, Pressman A, et al. Effectiveness management of gout in general practice: a qualitative study. Ann Rheum of a pharmacist-based gout care management programme in a large Dis. 2012;71:1490–5. integrated health plan: results from a pilot study. BMJ Open. 2014;4:e003627. 40. Te Karu L, Bryant L, Elley CR. Maori experiences and perceptions of gout 14. Green J, Britten N. Qualitative research and evidence based medicine. BMJ. and its treatment: a kaupapa Maori qualitative study. J Prim Health Care. 1998;316:1230–2. 2013;5:214–22. 15. Rai SK, Choi H, Choi SHJ, Townsend A, Shojania K, De Vera M. Key barriers to 41. Vaccher S, Kannangara DR, Baysari MT, Reath J, Zwar N, Williams KM, et al. gout care: a systematic review and thematic synthesis of qualitative studies. Barriers to care in gout: from prescriber to patient. J Rheumatol. 2016;43: Rheumatology (Oxford). 2018; https://doi.org/10.1093/rheumatology/kex530. 144–9. 16. Singh JA. Facilitators and barriers to adherence to urate-lowering 42. van Onna M, Hinsenveld E, de Vries H, Boonen A. Health literacy in patients therapy in African-Americans with gout: a qualitative study. Arthritis Res dealing with gout: a qualitative study. Clin Rheumatol. 2015;34:1599–603. Ther. 2014;16:R82. 43. Horne R, Weinman J, Barber N, Elliott R, Morgan M. Concordance, 17. Singh JA, Herbey I, Bharat A, Dinnella JE, Pullman-Mooar S, Eisen S, et al. adherence and compliance in medicine taking: report for the National Gout self-management in African-American veterans: a qualitative Coordinating Centre for NHS Service Delivery and Organisation R&D exploration of challenges and solutions from patients’ perspectives. Arthritis (NCCSDO). London: NCCDSO; 2005. Care Res. 2017;69:1724–32. 44. Horne R, Weinman J. Patients’ beliefs about prescribed medicines and their 18. De Vera MA, Howren A, Tsao N, Choi H, Kydd A, Friesen K, et al. THU0442 role in adherence to treatment in chronic physical illness. J Psychosom Res. eHealth supported collaborative care model for gout involving 1999;47:555–67. rheumatology, pharmacy, and dietetics: proof of concept observational 45. Morse JM. What use is it anyway? Considering modes of application and study [abstract]. Ann Rheum Dis. 2017;76(Suppl 2):374–375. contributions of qualitative inquiry. In: Olson K, Young RA, Schultz IZ, 19. Charmaz K. Constructing grounded theory. 2nd ed. London: Sage; 2014. editors. Handbook of qualitative health research for evidence-based 20. Sandelowski M. Whatever happened to qualitative description? Res Nurs practice. New York: Springer; 2016. p. 429–40. Health. 2000;23:334–40. 21. de Klerk E, van der Heijde D, Landewe R, van der Tempel H, van der Linden S. The compliance-questionnaire-rheumatology compared with electronic medication 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 with antirheumatic drug therapy. J Rheumatol. 1999;26:2635–41. 23. Hughes LD, Done J, Young A. A 5 item version of the Compliance Questionnaire for Rheumatology (CQR5) successfully identifies low adherence to DMARDs. BMC Musculoskelet Disord. 2013;14:286.

Journal

Arthritis Research & TherapySpringer Journals

Published: Jun 1, 2018

References

You’re reading a free preview. Subscribe to read the entire article.


DeepDyve is your
personal research library

It’s your single place to instantly
discover and read the research
that matters to you.

Enjoy affordable access to
over 18 million articles from more than
15,000 peer-reviewed journals.

All for just $49/month

Explore the DeepDyve Library

Search

Query the DeepDyve database, plus search all of PubMed and Google Scholar seamlessly

Organize

Save any article or search result from DeepDyve, PubMed, and Google Scholar... all in one place.

Access

Get unlimited, online access to over 18 million full-text articles from more than 15,000 scientific journals.

Your journals are on DeepDyve

Read from thousands of the leading scholarly journals from SpringerNature, Elsevier, Wiley-Blackwell, Oxford University Press and more.

All the latest content is available, no embargo periods.

See the journals in your area

DeepDyve

Freelancer

DeepDyve

Pro

Price

FREE

$49/month
$360/year

Save searches from
Google Scholar,
PubMed

Create lists to
organize your research

Export lists, citations

Read DeepDyve articles

Abstract access only

Unlimited access to over
18 million full-text articles

Print

20 pages / month

PDF Discount

20% off