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Facilitators and barriers to adherence to urate-lowering therapy in African-Americans with gout: a qualitative study

Facilitators and barriers to adherence to urate-lowering therapy in African-Americans with gout:... Introduction: Limited literature exists for qualitative studies of medication adherence in gout, especially in African-Americans. The aim of this study was to examine the facilitators and barriers to adherence to urate-lowering therapy (ULT) in African-Americans with gout. Methods: In this study, nine nominal groups lasting 1 to 1.5 hours each were conducted in African-Americans with gout, six with low ULT and three with high ULT adherence (medication possession ratios of <0.80 or ≥0.80, respectively). Patients presented, discussed, combined and rank ordered their concerns. A qualitative analysis was performed. Results: This study included 43 patients with mean age 63.9 years (standard deviation, 9.9), 67% men, who participated in nine nominal groups (seven in men, two in women): African-American men (n = 30); African-American women (n = 13). The main facilitators to ULT adherence (three groups) were the recognition of the need to take ULT regularly to prevent gout flares, prevent pain from becoming chronic/severe and to have less dietary restriction; the lack of side effects from ULT; trust in physicians; and avoiding the need to seek emergent/urgent care for flares. Patients achieved high ULT adherence by organizing their pills using the pillbox and the incorporation of ULT intake into their routine to prevent forgetting. The main barriers to optimal ULT adherence were (six groups): doubts about effectiveness of ULT, concerns about cost and side effects, concomitant medications, forgetfulness, refilling the prescriptions on time, pill size and difficulty in swallowing, competing priorities, patient preference for alternative medicines (that is, cherry juice) and frequent travel. Conclusions: Identification of facilitators and barriers to high ULT adherence in African-Americans with gout in this study lays the foundation for designing interventions to improve ULT adherence in racial minorities. Introduction inhibitors, such as allopurinol (used by the majority) and Gout is a chronic, inflammatory arthritis that affects febuxostat, with a much lower use of uricosurics, includ- 3.9% of U.S. adults [1]. Principles of appropriate long- ing probenecid [2-4]. Appropriate use of ULT is central term gout management include the appropriate use of to the achievement of target sUA < 6 mg/dl. Target sUA urate-lowering therapy (ULT) to keep serum urate (sUA) achievement is associated with a lower risk of gout at or below 6 mg/dl and to treat acute gout flares with flares, tophi and medical care costs [5-10] and is recom- short-term anti-inflammatory drugs such as corticos- mended by gout guidelines [11,12]. A key gap in gout teroids, colchicine or non-steroidal anti-inflammatory management is the lack of appropriate use of ULT, char- drugs (NSAIDs). ULT options include xanthine oxidase acterized by a suboptimal adherence to ULT and the use of lower than needed doses of ULT [9,13]. Of all rheum- Correspondence: [email protected] atic conditions leading to quality of life deficits, gout is Medicine Service, Birmingham VA Medical Center, 805B, 510 20th Street S, one of the most well understood biochemically and Birmingham, AL, USA Department of Medicine at School of Medicine, and Division of pathophysiology and perhaps most amenable to good Epidemiology at School of Public Health, University of Alabama, Birmingham, control and remission; yet it is successfully treated infre- AL, USA quently. This is at least partially due to our lack of Full list of author information is available at the end of the article © 2014 Singh; licensee BioMed Central Ltd. This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/2.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. Singh Arthritis Research & Therapy 2014, 16:R82 Page 2 of 13 http://arthritis-research.com/content/16/2/R82 understanding of why patients fail to use effective, cheap “loss of self” and, subsequently, social isolation [23]. Pa- treatments. tients with chronic diseases are often motivated to take Recent quantitative research that used surveys showed medications to treat the disease to avoid or reverse numerous patient knowledge gaps with regards to the illness-induced loss of self and to restore their disrupted use of ULT and other medications for gout [14]. Two re- biographies. On the other hand, medication itself may cent qualitative studies of semi-structured interviews lead to body failure, be perceived to either cause or be with 26 US Caucasian patients with gout and 20 UK associated with body failure or interfere with identity- Caucasian gout patients (15 men, 5 women) found that relevant function (for example, dizziness as a medication gout patients reported non-adherence with allopurinol side effect, preventing a patient from social activities), in and cited several reasons, such as financial concerns, which case patients will have low medication adherence forgetfulness and doubts about the benefits of long-term or will stop the medication. treatment [15,16]. Both studies were done in Caucasian Our objective was to better understand the impact of men, covered a broad array of topics ranging from the medication and illness meanings as well as biographical gout treatment to quality of life to patient knowledge disruption due to disease on the medication use and ad- and so on with relatively little focus on medication ad- herence in gout. To our knowledge, there are no qualita- herence, which is a key challenge in gout management tive or quantitative studies focused on medication [9,13]. Two large knowledge gaps exist in qualitative adherence in African-Americans with gout who have a studies in medication adherence in gout, since none disproportionate burden of the disease and higher rates of the previous studies: (1) recruited gout patients with of non-adherence [1,17-19]. Our study aim was to assess high medication adherence or stratified patients by the facilitators and barriers to adherence to ULT in medication adherence (for example, medication posses- African-Americans with gout, based on this chronic dis- sion ratio); and (2) recruited racial minorities. ease model. African-Americans share a disproportionate burden of gout compared to Caucasians, since the: (1) prevalence Methods of gout is higher (5% vs. 4%) [1]; (2) likelihood of treat- Patients ment with ULT including allopurinol is lower [17,18]; Patients were eligible for the study if they had had one or (3) non-adherence with ULT is higher (odds ratio, 1.86) more outpatient visit with an International Classification [19]; and (4) baseline serum urate (7.9 vs. 7.1) is higher of Diseases, ninth revision, common modification (ICD-9- and odds of achieving target serum urate levels <6 mg/dl CM) code for gout, that is, 274.xx, between January 2011 are lower (odds ratio, 0.67) [18]. To our knowledge, to September 2012 at the Kirklin Clinic, a community- there are no studies investigating the reasons for poor based outpatient clinic. Patients were screened on the tele- medication adherence in African-Americans with gout. phone for the presence of gout, whether they were taking None of the previous studies recruited patients with high or had taken allopurinol and/or febuxostat (the most com- medication adherence to understand the facilitators of mon urate-lowering therapies (ULTs)) for the treatment high ULT adherence. of gout, and regarding self-reported adherence to ULT Why do patients not take the gout medications they (<80% vs. ≥80%, corresponding to low vs. high adherers). are prescribed? Medication adherence depends greatly The University of Alabama at Birmingham’s Institutional on how patients perceive their disease/illness and what Review Board (IRB) approved the study. Patients provided meaning they attach to the disease and the treatment verbal consent (the need for written consent was waived [20,21]. Meanings are important and fundamental in by the IRB) and received free parking, light refreshments their interpretation of disease and treatments [22]. and a $30 check for study participation. Corbin and Strauss proposed a model for chronic disease consisting of three components, namely Body, Nominal group sessions Biographical time and Conceptions of self, that is, the A nominal group technique (NGT) is a variant of the BBC chain [23,24]. The model indicates that only when traditional focus group method that aims to identify the these three components are in balance, interactively sta- overall opinion of a group. The NGT is a structured bilizing and reinforcing one another, do people feel process aimed at developing an inclusive list of issues re- healthy and well [24-26]. Body failure and interference lated to a specific question, then soliciting feedback on with identity-relevant functions by chronic diseases can the relative importance of these lists through rank- lead to destabilization of the BBC chain, leading to a pa- ordering procedures [27-29]. NGT capitalizes on the par- tient having the sense of being ill. Chronic diseases can ticipants’ experiences and skills. The NGT has proven interfere with plans, performances and meanings, which successful in soliciting useful information from experts, formerly contributed to valued appraisals of self, resul- professional caregivers and patient groups for a variety ting in loss of previously valued self-image, described as of conditions [27,30-35]. An advantage of NGT is that it Singh Arthritis Research & Therapy 2014, 16:R82 Page 3 of 13 http://arthritis-research.com/content/16/2/R82 promotes more even participation rates and the input created a comprehensive list of statements (as in the from all group members is equally weighted. Therefore, tables). These are presented in the tables and results the data generated from NGT usually provide a more section. valid representation of the implicit views of the group than would be achieved with a traditional focus group Results format. Thus, while the focus groups are helpful in Nine nominal groups were conducted with African- understanding the breadth of an issue, the NGT is an Americans, three with higher adherers and six with excellent tool to address a specific key question low adherers to ULT. Overall, there were 30 African- in-depth. It is recommended that five to nine partici- American men (seven nominal groups) and 13 African- pants constitute each nominal group. A question was American women (two nominal groups) and mean age posed to the group after receiving extensive feedback (SD) was 63.9 (8.4). Several themes emerged from the on the wording of the question from gout patients in nominal groups, in high adherers (three groups) vs. low the clinic and clinicians - What keeps you from taking adherers (six groups) that are summarized in the two your allopurinol or Uloric (also called febuxostat) sections below. everyday? All nine nominal groups were held at the outpatient Facilitators to ULT adherence in African-American gout clinics at the Kirklin Clinic, in patient education rooms patients with high adherence that are set up with a white board, a round table with We conducted three nominal groups with 14 African- chairs and an area for refreshments. The PI and the American gout patients (all men) who had >80% MPR nominal group leader (JAS) welcomed the participants, for ULT. Mean age was 66.3 years (SD, 8.4), and 100% and after brief introductions, explained the purpose of were men. The main reasons why they took ULT regularly the study, and wrote the single key question for the were as follows (also, see Table 1). The first two themes nominal group on a flip chart, which was also used to were consistent with perception of a positive meaning of capture key concerns and patient discussion. Patients the medication and a positive effect of optimal treatment were also provided the question on a blank piece of on body and identity-relevant functions (mapping to the paper. Research associates (BA, AB, AO) provided ad- BBC model). ministrative support and assisted in taking notes and transcripts. 1. ULT prevented gout flares and pain: All three Each nominal group lasted 60 to 70 minutes and the groups listed this among their top facilitators. They NGT process was divided into four discrete steps. Each indicated that they took their ULT regularly to be member wrote down as many responses as possible, pain-free, keep gout under control, minimize usually in short phrases to the key question in the first flare-ups, prevent them from rushing to the doctor’s 10 to 15 minutes, independently and quietly. Next, the office for acute flares, prevent the pain from nominal group leader asked each member in a round- becoming chronic or severe and prevent handicap robin fashion to state an idea from his or her list and due to gout. One patient, who served in the armed wrote it on a flip chart placed before the group, indicat- forces, said “I have been shot- I’d rather be shot ing each idea with a unique letter from A to Z. No dis- again than have the pain due to gout”. cussion was permitted until all ideas had been listed. 2. ULT gave them a less restrictive diet: Two of the Subsequently, each item was discussed in an interactive three groups indicated this among the top group format and group participants consolidated items facilitators. Patients said that ULT intake allowed when applicable. Next, all participants were given five them to eat the foods they like in moderation index cards and were asked to identify and rank-order without having the flare-ups. the five responses deemed most important from 1 to 5, 3. Habit/routine: Two of the three groups indicated 5 being the highest score. The participants indicated this among the top facilitators. They mentioned that their preference for important items by rank ordering. taking their ULT was part of the routine, that they The outcome of the process was the mathematical ag- took their ULT along with other medications in the gregation of each member’s score with the highest score morning or the evening, use a pill box to organize corresponding to the top ranking theme for the group. their ULT and that a simple once a day intake makes Rank-ordered results from each nominal group were it easier to take this medication. mapped and compared. Similar to the within-group process, responses were analyzed based on the number Other reasons cited by one nominal group each in- of groups identifying responses with high relative rank cluded the following: ULT helped keep the chronic pain ordering. The transcriptions were examined to identify from gout under control and to avoid the condition all statements made relative to each response and from getting worse and pain from becoming more Singh Arthritis Research & Therapy 2014, 16:R82 Page 4 of 13 http://arthritis-research.com/content/16/2/R82 Table 1 Facilitators for medication adherence to allopurinol of febuxostat among African-Americans with gout Quotes # Votes Group 1 –African American men (four patients) Adversity to pain “If I don’t take it everyday, it (gout) would be back in my foot and anywhere.” 20 “It makes the pain stay away.” “Gout is super painful- I’ll do whatever avoid that pain.” “It hurts so bad, when I had gout.” “I have been shot- I’d rather be shot again than have the pain due to gout.” It is a habit “It’s simple, once a day.” 9 “Once a week, I put all my medications in a compartment in the pill box.” “It’s simple-take it once in the morning.” “Put the pill in the napkin and take it to work.” “It’s only 1 out of the 10 medications and it’s easy.” It solved my problem “When it first happened, I thought I hurt myself, then I was diagnosed with gout; 8 allopurinol solved the problem.” Avoid surgery/complications from other “I had surgery from gout once and it is helping me avoid another- they drained 7 medications gout from my foot.” “Helps avoid prednisone- put on 60 pounds in 30 days.” I do not recognize any bad side effects “I don’t see any side effects.” 7 Can go places that I want to go “Free to go anywhere” 5 “Can go to movie, park” “Have my mobility” “Makes me stay out of bed” Allopurinol gives me a less restrictive diet “Before allopurinol, certain foods triggered gout. Now I can eat anything I want 4 in moderation.” Group 2: African-American men (six patients) I take allopurinol to stop the pain “Prevent, minimize flare-up.” 26 “To be pain-free.” “Help keep the pain under control.” “I hurt so bad, I have to take it.” “The pain is hell.” “The pain was so bad, I couldn’t even walk.” “That’s a given.” It is a habit “I have a habit.” 14 “(it’s a) routine” “I take my meds in the morning- I wake up dry and take my meds with water in the morning.” “I was taking my meds irregular, then over time it became regular.” “Being consistent with my blood pressure med made me consistent with my allopurinol.” Allopurinol is a good medicine that my family “I don’t have to see a specialist.” 13 practice doctor can prescribe “It costs more and I have to drive longer to see a specialist, if I have to go to specialist; (I go) when a medication other than allopurinol is needed.” When I am fine, my family is also “Helps to keep the family to do things that they want to do.” 8 “If I am ok, my family is ok, everything “clicks”.” Singh Arthritis Research & Therapy 2014, 16:R82 Page 5 of 13 http://arthritis-research.com/content/16/2/R82 Table 1 Facilitators for medication adherence to allopurinol of febuxostat among African-Americans with gout (Continued) To keep my mobility “…To keep me walking.” 8 “Gout hit me so bad, both sides, I could do nothing; now I can do things.” “Helps me walk inside and outside.” “Activities I’d like to do.” “I am very active, helps me stay active.” “Let’s me do exercise, bicycling.” “I can go on the treadmill.” “Affects my quality of life positively.” I purchase my meds (including allopurinol) “If I get 30-day prescription, I keep running out.” 7 every 90-days, it helps me not run out “I do mail order for 90-days.” “I get it at Costco.” “90-day is cheaper than 30-day.” I use a pill organizer, and organize my pills “ I have been using it (pill organizer) for years, that’s the one thing that helped, 7 every two weeks “that nailed it.” “Just do it.” “Keep it on the track.” “Very effective.” “You go back and see if you took it- sometimes I find out I didn’t take it.” “It becomes more or less a protocol.” Allopurinol is an everyday medication “This is a medication, we have to take every day to keep it in our system.” 6 “If you get off for 2–3 days, it (gout) is coming back.” Allopurinol gave them a less restrictive diet “I can eat most things I want.” 3 Group 3: African-American men (five patients)* I was requested by my doctor “I have faith in my doctor.” 17 “Think doctors are here for a purpose.” “My doctor knows the best.” “Trust.” Take allopurinol to stop the gout from hurting “The thought of flare-up (is scary).” 17 “The thought of the condition getting worsening, the pain becoming more severe…” “Keeps me from having to rush to doctor’s office.” “You have to take it.” “Since being on allopurinol, I haven’t had a flare for 2 years.” “Take allopurinol to prevent the handicap.” “The thought of condition spreading to other foot.” Because it helps to keep my uric acid in check “The reason gout come is that uric acid builds up in the bone; Now uric acid is where it 14 is supposed to be, that’s why my gout is away.” I do not want to report to my doctor that I was “.. expectations from my doctor (My doc has set expectations).” 8 not taking my allopurinol *4 patients voted, one had to leave prior to voting. severe; ULT avoided complications from other medica- Barriers to ULT adherence in in African-American gout tions such as prednisone; ULT was not associated with patients with low adherence any bad side effects; patients trusted their health care In six nominal groups of 29 African-American gout pa- provider’s recommendation; ULT was easily prescribed tients with a mean age (SD) of 62.5 (7.6) years (range, 60 by their primary without the need to go to a specialist; to 75 years; 16 men and 13 women) with suboptimal and that it helped the patients keep their uric acid adherence to ULT, we explored the reasons for poor ad- under check (Table 1). herence to ULT, that is, barriers to ULT adherence. The Singh Arthritis Research & Therapy 2014, 16:R82 Page 6 of 13 http://arthritis-research.com/content/16/2/R82 following were the top themes, identified as barriers to 6. Refill issues: Four of the six groups listed this among ULT adherence, among the six nominal groups (also, see their top concerns. Patients reported they often ran Table 2). The first four themes were consistent with the out of prescriptions, could not easily figure out patient’s perception of the meaning of the medication which one was due for refill due to their taking and its association with body failure or interference with multiple medications, threw away the bottle before identity relevant functions. calling it in, did not order the refill in time, had difficulty picking up the prescription from the 1. Not convinced that the ULT medication is effective: pharmacy, or felt lazy regarding getting the refill in All six groups listed this among their top concerns. time. Patients reported that they were doing great without 7. Forgetting to take the ULT medication: All six ULT medication, if gout had subsided they did not groups listed this among their top concerns. Patients need to take the ULT medication, other medications, reported forgetting because of other things they had such as indomethacin, worked better for their gout, to do, travel related to their work, being on vacation, gout flare-ups continued despite taking ULT, they the fact that they take so many other pills, trouble did not know whether or not to take their ULT reading labels due to vision problems and the medication during an acute gout flare, they were not interruption of their daily routine. sure whether medication was effective in preventing gout flares, they skipped the medication when they One nominal group each brought up the following in felt better with their gout, they were not sure their top seven concerns, with the first two being con- whether the medication worked for their gout, they sistent with identity-relevant functions. decided whether or not to take the ULT based on how they felt, and they did not feel a difference in 1. Issues related to travel and the need to plan ahead of their symptoms when they missed ULT for a few time: Patients reported not having their ULT with days. them when they were out of town. They also 2. Side effects: Five of the six groups listed this among indicated that they needed to plan ahead to take their top concerns. Patients reported mainly their medication with them or access it through a gastrointestinal side effects such as gastritis, retail pharmacy in another town/place when they abdominal pain, bad taste in the mouth, belching, were traveling. nausea, vomiting and diarrhea, and drowsiness. 2. Medication causing flares: Some patients reported 3. Concomitant medications and intake of too many big flares when they started taking ULT that made pills: We combined these two inter-related concepts them go to the emergency room or experiencing and four of the six groups listed this among their attacks too often after starting ULT. top concerns. Patients were concerns about taking 3. Patient preference for alternative medicine: Patients too many pills and associated frustration, taking too indicated that they decided to take cherry juice many milligrams in total being detrimental to their instead of allopurinol, or eating cherries. body, side effects from other medications (nausea) 4. Competing priorities: Patients cited being busy with making it difficult for them to take the ULT and multiple jobs and the need to work all the time as medication interactions. barriers to the regular intake of ULT. 4. Pill size and swallowing difficulty: Two of the six groups listed this among their top concerns. Patients Discussion complained about the large size of the pill, the need To our knowledge, this is the first qualitative study to to break the pill to swallow it, problem swallowing assess facilitators and barriers to ULT adherence in due to vocal cord disease and the need to swallow African-Americans with gout and the first study to enroll one pill at a time when we are prescribed multiple gout patients with low and high ULT adherence. The main pills per day due to the dose needed. barriers to optimal ULT adherence were doubts about the 5. Cost: Five of the six groups listed this among their effectiveness of ULT, concerns about cost and side effects top concerns. Patients were concerned about (short-term and long-term cumulative), the impact of con- copayment with limited resources and the need to comitant medications and of taking too many pills, for- fill multiple medication prescriptions, the expensive getfulness, challenges with refilling the prescriptions on nature of the ULT (especially febuxostat), the need time, pill size and difficulty in swallowing, competing pri- to ration the pills due to limited income and the orities, patient preference for alternative medicines (such challenges with copayment after retirement or losing as cherry juice or extract) and frequent work-related job insurance which previously had covered the travel. The main facilitators to ULT adherence included ULT. patient realization that they needed to take ULT regularly Singh Arthritis Research & Therapy 2014, 16:R82 Page 7 of 13 http://arthritis-research.com/content/16/2/R82 Table 2 Barriers to allopurinol or febuxostat adherence among African-Americans with gout Quotes # Votes Group 4: African-American women (six patients) Not convinced that the medication is “I felt it wasn’t helping me.” 20 effective and should be taken daily “When I missed a few days nothing changed.” “Taking it did not make any difference.” “If it is doing good then why should you have to take additional medications?” “I would miss days and not feel any different from when I was taking it.” “Maybe it was a dosing issue?” “I have intermittent flare ups and I have learned to use colcrys as a treatment.” Forgetting to take the medicine “I’m not going to forget the gout pill during an active attack. It more of a mental thing (to forget 21 the routine otherwise) that I think its not doing any good.” “Sometimes I will just plain forget because I am busy etc.” “If I forget I will take it later in the day. I go ahead and take it because I do not want to flare up.” “I will forget because I am taking so many other medications.” “Can’t remember if I have taken it that day so I will not take an extra because I do not want to take double.” “If your daily routine is interrupted then it is easy to forget because you are used to taking it at the same time each day.” “Did I take it, did I forget?” Side effects “I have gastritis. Switched my times taking it now and night with milk and I have not 15 had anymore episodes.” “Sometimes it will make me sick. I will throw up.” “I just got tired of being sick on my stomach.” “You may wonder what you have eaten but it only happens when you take that pill.” “I had abdominal pain.” “…(it) caused diarrhea.” Other concomitant medications “Too many pills to take for other conditions.” 14 “Additional gout medications and still having flares.” “All of my medications are grouped together. If I miss one I miss them all.” “I keep thinking about the milligrams that I am taking. I don’t want to hurt my body. I am taking to many milligrams.” “Sometimes I feel “lazy” because I take so many pills.” Concern about drug interactions I don’t know what affect the other medicines have on my gout medications. Is that 11 what’s making me sick. I don’t know. Cost “I have to be able to get my other prescriptions, and this gives me trouble due to cost.” 5 “Trying to balance between my medications and my daughters meds makes it very difficult.” Travel and planning for travel “Sometimes I am out of town, and did not have my medication with me.” 4 “I take my whole bottle so that I will not do without.” “My medication come from CVS so I can get them from most places in the US.” Group 5: African-American women (seven patients) Cost “My insurance does not cover this.” 27 “I am on fixed income, $77 for 1 month, sometimes, I don’t have money for copay.” “Doctor has to call in the medication despite the prescription- due to insurance company.” Forgetting to take the medicine “Problem with eyes, reading the label is not easy taking too may other medications.” 21 “Usually took it every day before work; Sunday and Saturday is an issue, since I don’t go to work.” “Out of routine.” Singh Arthritis Research & Therapy 2014, 16:R82 Page 8 of 13 http://arthritis-research.com/content/16/2/R82 Table 2 Barriers to allopurinol or febuxostat adherence among African-Americans with gout (Continued) Other concomitant medications “I get nausea from other medications.” 13 “Gout pill is the last one I take. So when I am nauseous from others, I skip.” Too many medications “I did not want to take it because I was taking so many other medications.” 10 “I am tired of taking medications.” “Recently have had very high BP in 200 s, got a lot of pills that required more allopurinol.” Medication refill issues “It may have been that I could not pick up the prescription from the pharmacy.” 9 “When I ran out, did not fill it as soon as I could.” “Felt lazy.” “Too may things to do…” “I have negligence…” Alternative medicine choices “I read cherry juice was god, so I took cherry juice instead of allopurinol.” 3 “I don’t like to take medicine.” “I tried eating cherries…” Not convinced that the medication is “Not hurting in weeks, So I thought I did not need to take it.” 6 effective and should be taken daily “If I skip it for a week, I feel flare coming on, but less than that can’t see a difference.” Large pill size and vocal cord problems “Pills are big, now taking 5 other pills.” 16 with swallowing “I break the pill up due to swallowing problem.” “Sometimes have problem swallowing because of vocal cord problems.” Group 6: African-American men (three patients) Side effects “It makes me sluggish along with my other medications- not knowing which medication 11 causes drowsiness.” “Bad taste in mouth.” “Belching” “I am a retired entertainer, you don’t want to be drowsy, you want to be alert.” “I used to play at church. You can’t do that when you are sluggish. I say “Amen, I am out of here.” Too many medications “I have so much on my mind due to the all the pills I have to take.” 9 “My mind comes and goes, I was in the military.” “Getting frustrated with the routine of taking so much medication- I just want to stop.” Not convinced that the medication is “When I feel better, I don’t take it.” 8 effective and should be taken daily “If everything is good, you feel better in the morning – I don’t need it today.” “If I could not do it today (take my allopurinol), I’d be ok.” “If I feel better, I think I don’t need it today.” “If better in the morning, I take my allopurinol in the afternoon.” Forgetting to take the medicine “When I don’t see in the pill box, I miss it.” 8 and confusion “Usually I set pills out at night; I take 12 pills, so I have 2 pill boxes, sometimes I forget which day it is and forget to take it.” “I have a pill box too, if I am feeling ok, I am not going to take 2–3 of them.” “Sometime I can’t remember, because I took so many pills.” “I take 6 pills a day- sometime I can’t remember, because I take so many pills.” “I take 7 pills, if I am tired, I can’t remember, whether I took it.” Cost/economic impact “Very expensive.” 5 “Copay was $20- I have to ration the pills; I go with the pill I need the most, when I do that.” “I pay $40 co-pay.” “I live in the retirement home; so (what I have left for) my rent goes up or down with my copays.” “My income changed all of a sudden, when I lost my job, it was difficult.” Singh Arthritis Research & Therapy 2014, 16:R82 Page 9 of 13 http://arthritis-research.com/content/16/2/R82 Table 2 Barriers to allopurinol or febuxostat adherence among African-Americans with gout (Continued) Pill size “Pill too big” 3 “Sometimes it’s hard for me to swallow, I take 600 mg.” “The 300 mg pill is bigger than 100 mg. I had to take a lot of water to wash it down.” “Have to take one pill at a time.” Side effects and problems with taking “When the pain is very severe, I can’t eat and I don’t take pills without eating.” 1 it on an empty stomach “Makes your stomach queasy.” “I took allopurinol later in the day without food, stomach starting feeling bad.” Group 7: African-American men (five patients) Forgetting to take the medicine “It could be business travel, just a busy day, or hey I forgot that day. I have started putting 16 my medicine in the weekly pill distributor. I also take blood pressure medicine and will forget it from time to time. I will forget my gout medication more regularly. Both must be ordered and for some reason I will remember to order the blood pressure medication more often. I don’t tend to forget it.” “It is easy to forget on a vacation day.” Medication causing the flares “(allopurinol) caused me to have big flare where I had to go to the emergency room.” 14 “I just don’t take it. - the attacks were coming too frequently. To the point I could not get out of the bed.” Not convinced that the medication “Would work at times but at others it would not.” 11 is effective “I would still have flare ups. (I had been on it for at least 2 months then again within the first 30 days).” Side effects “…Made me nauseated. – felt like I wanted to throw up.” 10 “Hard on the stomach.” “It just don’t feel right.” “Its better when I drink milk, but I’m not sure if that is causing me to flare more.” “Continuously in the bathroom issue. (Diarrhea) after the second day in my system it would start.” “Diarrhea at least once a day.” Refill issues “….mainly my fault.” 10 “I just didn’t order it in time.” Cost/economic impact “Uloric worked fine with the gout flares, but due to my insurance the medication 8 was expensive. Additional paperwork is required yearly to get it approved.” Too many pills “Plus taking it on top of all the other mediation I take (high blood pressure etc.).” 6 “Too many meds in my system.” “Started off twice a day moved to once.” “With the other medications it just does not do me any good.” Group 8: African-American men (six patients) Not convinced that the medication is “It don’t work for me.” 27 effective and should be taken daily “Took Indocin for years that helped. I took allopurinol, didn’t help, I was having more pain while taking allopurinol compared to when I was taking Indocin. Indocin worked better.” “It took too long to clear up the pain.” “I would still have flare ups. I had been on it for at least 2 months.” “If gout has subsided, I did not need to take it, so I stopped.” Side effects “Because of the side effects of allopurinol.” 17 “Because of the gout infection in my elbow: My elbow got sore, I was told to take allopurinol, pain got worse, got fluid out of the elbow, diagnosed with infection, told it was due to allopurinol, got antibiotics in the hospital and then at home –have not taken allopurinol since then.” “The doctor took me off of it due to side effects.” Singh Arthritis Research & Therapy 2014, 16:R82 Page 10 of 13 http://arthritis-research.com/content/16/2/R82 Table 2 Barriers to allopurinol or febuxostat adherence among African-Americans with gout (Continued) Cost/Economic impact “Money- It was Money.” 12 “Have to take a lot of meds, copay went up, have to choose.” Refill issues “I forget to refill.” 11 “I threw away my bottle before I calling.” “Sometimes forget to go and pick up from pharmacy.” “I have so many meds that I take, its’ not easy (to remember which one is due for refill).” Forgetting to take the medicine “Forget to take it.” 8 “Forget to take it on time.” “Sometimes on the go, can’t take any of my medications.” “Most of the time, I take my medication after breakfast, if I don’t see the pill box at breakfast, I forget at times.” Group 9: African-American men (two patients) Not convinced that the medication “Doing great without medication.” 9 is effective Refill issues “Prescription ran out- didn’t fill it.” 9 Competing priorities “Working all the time.” 5 “I have to get to my jobs and getting to work (keeps me busy).” Forgetting to take the medicine “Keep forgetting (to take it).” 5 “…because of other things I have to do.” to prevent gout flares, to prevent the severe pain and convinced that ULT was needed every day or was help- handicaps associated with acute gout and to prevent pain ing their gout vs. high adherers who had the very oppo- from becoming chronic/severe, the patients organizing site experience and perception, that is, the ULT helped their pills and their routine so that they would not forget them avoid severe pain and suffering. Low adherers cited to take their ULT, the patient’s ability to have fewer dietary lack of knowledge and communication from physicians restrictions and the ability to eat foods they liked in mod- regarding the usefulness of ULT, an important observa- eration once they were taking ULT regularly, lack of side tion from our study, complimenting a survey study find- effects, avoidance of side effects from alternatives such as ing that knowledge deficits were common in gout corticosteroids, trust in physicians, and avoiding the need patients [14]. High adherers had greater trust in their to seek frequent emergent/urgent care or a subspecialist’s physicians and saw the adherence to ULT as a way to care. Several findings from this study deserve further avoid more doctor visits, keep their uric acid levels in discussion. check and prevent chronic joint damage that reflected It is now well-known that compared to Caucasians, more knowledge about gout and treatments. African-Americans not only have a higher prevalence of The current study also provides an in-depth examin- gout [1], but also have more severe gout with higher ation of ULT adherence in African-Americans. Some baseline sUA, worse ULT adherence and lower likelihood quotes from patients were eye-openers; for example, one of ULT treatment and the achievement of target sUA veteran who had served in the armed forces said, “I have <6 mg/dl [17-19]. This disproportionate burden of gout been shot. I’d rather be shot than have my gout attack and the lack of any previously published studies on racial again”, signifying the severe pain of gout and its impact minorities were the key motivations for our study. on patients and why it is so important to adequately Several findings in this study are novel. Both low and treat gout. This study adds knowledge to the area by high adherers to ULT identified issues related to body identifying additional previously not-described barriers, medication, identity-relevant functions (interference or such as the impact of concomitant medications and of facilitation) and meaning imparted to the mediation as taking too many pills, ULT pill size, swallowing diffi- culty, patient preference for alternative medicines, key facilitators and barriers to ULT adherence, that fit our theoretical model, that is, the trajectory model with travel-related and refill issues, and competing priorities. the BBC chain [23,24]. The themes were opposite in se- These findings indicate that non-medication alternatives are considered true alternatives to pharmacotherapy by veral common domains. A key difference in low vs. high adherers was their understanding of what the medication patients and should be discussed with patients with gout. could/would do for them. The low adherers were not Now that these barriers have been identified, a further Singh Arthritis Research & Therapy 2014, 16:R82 Page 11 of 13 http://arthritis-research.com/content/16/2/R82 study into how to develop interventions targeting these knowledge that we plan to investigate next. Other studies barriers is needed. Patient education and patient- have shown gender differences in medication adherence physician communication can target several barriers and with women having slightly lower adherence than men has the potential to improve the outcomes in African- [37-39]. It remains to be seen if this is true in the case of Americans with gout. Gaps in patient and physician gout as well, a predominantly male disease. knowledge have been demonstrated in addition to their Our study has several limitations. While we reached sat- perception of treatment related issues in gout, including uration for our low-adherers with the six nominal groups, non-adherence [15]. This indicates that education initia- one may wonder if we reached saturation in high- tives may also need to target both patients and health adherers. We were able to identify and successfully recruit care providers to reduce the differences in perceptions. fewer patients with ULT adherence of 80% or more in our Other key findings from this study based on studying study, even after extensive telephone screening. However, facilitators to high ULT adherence, may help educate low- several themes were noted to be repeating in the current adherers and design interventions. African-American gout sample of high adherers, supporting the notion that satur- patients, who were our success stories (high-adherers) dif- ation can be attained with two to three nominal groups, as fered from those with poor ULT adherence (low-adherers) it seemed to be in our case. The number of high adherers in several key aspects, which also map well to the Health recruited in this study is the largest nominal group sample Belief Model [36]. This model emphasizes that individuals studied to date. Second, this in-depth study has findings can change their behavior if they consider themselves sus- applicable to African-Americans with gout. We over- ceptible to disease (chronic pain), realize the disease’scon- sampled for women with gout (another understudied sequences (frequent flares) and perceive that engagement population) to improve the study’s generalizability. Gene- in a particular behavior (ULT adherence) will be beneficial ralizability to Caucasians was not our goal, since at least in preventing negative disease consequences and disease two small studies exist in Caucasians and our focus was severity (preventing flares, pain, suffering [36]. Compared disadvantaged minorities. However, several themes from to low adherers, gout patients with high ULT adherence: earlier studies with Caucasians were replicated in this (1) understood their disease severity, including gout re- study, indicating some applicability to Caucasians. Study lated pain and suffering, better (better perception of dis- strengths included study of a difficult to reach, under- ease severity and personal susceptibility); (2) did not have served and understudied group that bears a dispropor- misconceptions regarding ULT and had a better percep- tionate burden of gout and the use of NGT to obtain an tion that ULT benefits outweigh risks (side effects), that is, in-depth answer to the specific study question. considered the balance of perceived barriers to treatment and benefits from treatment favorable to them and (3) had Conclusion effective cues to prompt action of regular ULT intake In conclusion, this study provides an in-depth insight into (using a pillbox; taking medications at the same time; facilitators and barriers to ULT adherence in African- health belief model). Thus, they had overcome the same Americans with gout. Several new themes were identified barriers that were faced by their peers that had poor ad- in this study. This new knowledge should serve as a foun- herence to ULT. Thus, if an intervention can incorporate dation for research of behavioral and non-behavioral in- ways to encourage several behaviors practiced by the terventions to improve ULT adherence in minorities with high-adherers, it has the potential to improve ULT adhe- gout. Such studies have the potential to improve gout care rence and gout outcomes. and outcomes in patients suffering from this disease. Our study is the first to confirm that several barriers to Abbreviations optimal allopurinol use in Caucasians [15,16] are also bar- BBC chain: Body, Biographical time and Conceptions of self; ICD-9- riers to optimal allopurinol use in African-Americans. In a CM: International Classification of Diseases, ninth revision, common modification; IRB: Institutional Review Board; NGT: Nominal group technique; qualitative study of 26 Caucasian patients with gout, du- NSAIDs: Non-steroidal anti-inflammatory drugs; SD: Standard deviation; ring the phone interviews, gout patients cited financial sUA: serum urate; ULT: Urate-lowering therapy. concerns, forgetfulness, worsening of gout, potential side Competing interests effects, lack of information and doubts about the length of There are no financial conflicts related directly to this study. JAS has received treatment, as reasons [15]. In another study of 20 UK gout research and travel grants from Takeda and Savient, and consultant fees patients (15 men, 5 women), during the semi-structured from Savient, Takeda, Regeneron and Allergan. interviews with gout patients that covered a wide array of Acknowledgements topics, patients reported non-adherence often due to con- I thank Dr. Isabel Scarinci for her comments on this manuscript, Bridgett cern about the side-effects or the belief that gout did not Alday for contacting patients and providing support for conducting the nominal groups, Ana Oliviera and Aseem Bharat for help conducting the warrant any long-term treatment [16]. Our study design nominal groups and Mary Elkins for the administrative oversight. I thank the did not allow us to compare the barriers to gout medica- patients and several colleagues who provided informal input into drafting tion adherence by gender. This is an important gap in our the question for the nominal groups. 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Curr HIV/AIDS Rep 2011, 8:277–287. doi:10.1186/ar4524 Cite this article as: Singh: Facilitators and barriers to adherence to urate-lowering therapy in African-Americans with gout: a qualitative study. Arthritis Research & Therapy 2014 16:R82. Submit your next manuscript to BioMed Central and take full advantage of: • Convenient online submission • Thorough peer review • No space constraints or color figure charges • Immediate publication on acceptance • Inclusion in PubMed, CAS, Scopus and Google Scholar • Research which is freely available for redistribution Submit your manuscript at www.biomedcentral.com/submit http://www.deepdyve.com/assets/images/DeepDyve-Logo-lg.png Arthritis Research & Therapy Springer Journals

Facilitators and barriers to adherence to urate-lowering therapy in African-Americans with gout: a qualitative study

Singh, Jasvinder
Arthritis Research & Therapy , Volume 16 (2) – Mar 29, 2014
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Springer Journals
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Copyright © 2014 by Singh; licensee BioMed Central Ltd.
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Medicine & Public Health; Rheumatology; Orthopedics
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1478-6354
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10.1186/ar4524
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24678765
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Abstract

Introduction: Limited literature exists for qualitative studies of medication adherence in gout, especially in African-Americans. The aim of this study was to examine the facilitators and barriers to adherence to urate-lowering therapy (ULT) in African-Americans with gout. Methods: In this study, nine nominal groups lasting 1 to 1.5 hours each were conducted in African-Americans with gout, six with low ULT and three with high ULT adherence (medication possession ratios of <0.80 or ≥0.80, respectively). Patients presented, discussed, combined and rank ordered their concerns. A qualitative analysis was performed. Results: This study included 43 patients with mean age 63.9 years (standard deviation, 9.9), 67% men, who participated in nine nominal groups (seven in men, two in women): African-American men (n = 30); African-American women (n = 13). The main facilitators to ULT adherence (three groups) were the recognition of the need to take ULT regularly to prevent gout flares, prevent pain from becoming chronic/severe and to have less dietary restriction; the lack of side effects from ULT; trust in physicians; and avoiding the need to seek emergent/urgent care for flares. Patients achieved high ULT adherence by organizing their pills using the pillbox and the incorporation of ULT intake into their routine to prevent forgetting. The main barriers to optimal ULT adherence were (six groups): doubts about effectiveness of ULT, concerns about cost and side effects, concomitant medications, forgetfulness, refilling the prescriptions on time, pill size and difficulty in swallowing, competing priorities, patient preference for alternative medicines (that is, cherry juice) and frequent travel. Conclusions: Identification of facilitators and barriers to high ULT adherence in African-Americans with gout in this study lays the foundation for designing interventions to improve ULT adherence in racial minorities. Introduction inhibitors, such as allopurinol (used by the majority) and Gout is a chronic, inflammatory arthritis that affects febuxostat, with a much lower use of uricosurics, includ- 3.9% of U.S. adults [1]. Principles of appropriate long- ing probenecid [2-4]. Appropriate use of ULT is central term gout management include the appropriate use of to the achievement of target sUA < 6 mg/dl. Target sUA urate-lowering therapy (ULT) to keep serum urate (sUA) achievement is associated with a lower risk of gout at or below 6 mg/dl and to treat acute gout flares with flares, tophi and medical care costs [5-10] and is recom- short-term anti-inflammatory drugs such as corticos- mended by gout guidelines [11,12]. A key gap in gout teroids, colchicine or non-steroidal anti-inflammatory management is the lack of appropriate use of ULT, char- drugs (NSAIDs). ULT options include xanthine oxidase acterized by a suboptimal adherence to ULT and the use of lower than needed doses of ULT [9,13]. Of all rheum- Correspondence: [email protected] atic conditions leading to quality of life deficits, gout is Medicine Service, Birmingham VA Medical Center, 805B, 510 20th Street S, one of the most well understood biochemically and Birmingham, AL, USA Department of Medicine at School of Medicine, and Division of pathophysiology and perhaps most amenable to good Epidemiology at School of Public Health, University of Alabama, Birmingham, control and remission; yet it is successfully treated infre- AL, USA quently. This is at least partially due to our lack of Full list of author information is available at the end of the article © 2014 Singh; licensee BioMed Central Ltd. This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/2.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. Singh Arthritis Research & Therapy 2014, 16:R82 Page 2 of 13 http://arthritis-research.com/content/16/2/R82 understanding of why patients fail to use effective, cheap “loss of self” and, subsequently, social isolation [23]. Pa- treatments. tients with chronic diseases are often motivated to take Recent quantitative research that used surveys showed medications to treat the disease to avoid or reverse numerous patient knowledge gaps with regards to the illness-induced loss of self and to restore their disrupted use of ULT and other medications for gout [14]. Two re- biographies. On the other hand, medication itself may cent qualitative studies of semi-structured interviews lead to body failure, be perceived to either cause or be with 26 US Caucasian patients with gout and 20 UK associated with body failure or interfere with identity- Caucasian gout patients (15 men, 5 women) found that relevant function (for example, dizziness as a medication gout patients reported non-adherence with allopurinol side effect, preventing a patient from social activities), in and cited several reasons, such as financial concerns, which case patients will have low medication adherence forgetfulness and doubts about the benefits of long-term or will stop the medication. treatment [15,16]. Both studies were done in Caucasian Our objective was to better understand the impact of men, covered a broad array of topics ranging from the medication and illness meanings as well as biographical gout treatment to quality of life to patient knowledge disruption due to disease on the medication use and ad- and so on with relatively little focus on medication ad- herence in gout. To our knowledge, there are no qualita- herence, which is a key challenge in gout management tive or quantitative studies focused on medication [9,13]. Two large knowledge gaps exist in qualitative adherence in African-Americans with gout who have a studies in medication adherence in gout, since none disproportionate burden of the disease and higher rates of the previous studies: (1) recruited gout patients with of non-adherence [1,17-19]. Our study aim was to assess high medication adherence or stratified patients by the facilitators and barriers to adherence to ULT in medication adherence (for example, medication posses- African-Americans with gout, based on this chronic dis- sion ratio); and (2) recruited racial minorities. ease model. African-Americans share a disproportionate burden of gout compared to Caucasians, since the: (1) prevalence Methods of gout is higher (5% vs. 4%) [1]; (2) likelihood of treat- Patients ment with ULT including allopurinol is lower [17,18]; Patients were eligible for the study if they had had one or (3) non-adherence with ULT is higher (odds ratio, 1.86) more outpatient visit with an International Classification [19]; and (4) baseline serum urate (7.9 vs. 7.1) is higher of Diseases, ninth revision, common modification (ICD-9- and odds of achieving target serum urate levels <6 mg/dl CM) code for gout, that is, 274.xx, between January 2011 are lower (odds ratio, 0.67) [18]. To our knowledge, to September 2012 at the Kirklin Clinic, a community- there are no studies investigating the reasons for poor based outpatient clinic. Patients were screened on the tele- medication adherence in African-Americans with gout. phone for the presence of gout, whether they were taking None of the previous studies recruited patients with high or had taken allopurinol and/or febuxostat (the most com- medication adherence to understand the facilitators of mon urate-lowering therapies (ULTs)) for the treatment high ULT adherence. of gout, and regarding self-reported adherence to ULT Why do patients not take the gout medications they (<80% vs. ≥80%, corresponding to low vs. high adherers). are prescribed? Medication adherence depends greatly The University of Alabama at Birmingham’s Institutional on how patients perceive their disease/illness and what Review Board (IRB) approved the study. Patients provided meaning they attach to the disease and the treatment verbal consent (the need for written consent was waived [20,21]. Meanings are important and fundamental in by the IRB) and received free parking, light refreshments their interpretation of disease and treatments [22]. and a $30 check for study participation. Corbin and Strauss proposed a model for chronic disease consisting of three components, namely Body, Nominal group sessions Biographical time and Conceptions of self, that is, the A nominal group technique (NGT) is a variant of the BBC chain [23,24]. The model indicates that only when traditional focus group method that aims to identify the these three components are in balance, interactively sta- overall opinion of a group. The NGT is a structured bilizing and reinforcing one another, do people feel process aimed at developing an inclusive list of issues re- healthy and well [24-26]. Body failure and interference lated to a specific question, then soliciting feedback on with identity-relevant functions by chronic diseases can the relative importance of these lists through rank- lead to destabilization of the BBC chain, leading to a pa- ordering procedures [27-29]. NGT capitalizes on the par- tient having the sense of being ill. Chronic diseases can ticipants’ experiences and skills. The NGT has proven interfere with plans, performances and meanings, which successful in soliciting useful information from experts, formerly contributed to valued appraisals of self, resul- professional caregivers and patient groups for a variety ting in loss of previously valued self-image, described as of conditions [27,30-35]. An advantage of NGT is that it Singh Arthritis Research & Therapy 2014, 16:R82 Page 3 of 13 http://arthritis-research.com/content/16/2/R82 promotes more even participation rates and the input created a comprehensive list of statements (as in the from all group members is equally weighted. Therefore, tables). These are presented in the tables and results the data generated from NGT usually provide a more section. valid representation of the implicit views of the group than would be achieved with a traditional focus group Results format. Thus, while the focus groups are helpful in Nine nominal groups were conducted with African- understanding the breadth of an issue, the NGT is an Americans, three with higher adherers and six with excellent tool to address a specific key question low adherers to ULT. Overall, there were 30 African- in-depth. It is recommended that five to nine partici- American men (seven nominal groups) and 13 African- pants constitute each nominal group. A question was American women (two nominal groups) and mean age posed to the group after receiving extensive feedback (SD) was 63.9 (8.4). Several themes emerged from the on the wording of the question from gout patients in nominal groups, in high adherers (three groups) vs. low the clinic and clinicians - What keeps you from taking adherers (six groups) that are summarized in the two your allopurinol or Uloric (also called febuxostat) sections below. everyday? All nine nominal groups were held at the outpatient Facilitators to ULT adherence in African-American gout clinics at the Kirklin Clinic, in patient education rooms patients with high adherence that are set up with a white board, a round table with We conducted three nominal groups with 14 African- chairs and an area for refreshments. The PI and the American gout patients (all men) who had >80% MPR nominal group leader (JAS) welcomed the participants, for ULT. Mean age was 66.3 years (SD, 8.4), and 100% and after brief introductions, explained the purpose of were men. The main reasons why they took ULT regularly the study, and wrote the single key question for the were as follows (also, see Table 1). The first two themes nominal group on a flip chart, which was also used to were consistent with perception of a positive meaning of capture key concerns and patient discussion. Patients the medication and a positive effect of optimal treatment were also provided the question on a blank piece of on body and identity-relevant functions (mapping to the paper. Research associates (BA, AB, AO) provided ad- BBC model). ministrative support and assisted in taking notes and transcripts. 1. ULT prevented gout flares and pain: All three Each nominal group lasted 60 to 70 minutes and the groups listed this among their top facilitators. They NGT process was divided into four discrete steps. Each indicated that they took their ULT regularly to be member wrote down as many responses as possible, pain-free, keep gout under control, minimize usually in short phrases to the key question in the first flare-ups, prevent them from rushing to the doctor’s 10 to 15 minutes, independently and quietly. Next, the office for acute flares, prevent the pain from nominal group leader asked each member in a round- becoming chronic or severe and prevent handicap robin fashion to state an idea from his or her list and due to gout. One patient, who served in the armed wrote it on a flip chart placed before the group, indicat- forces, said “I have been shot- I’d rather be shot ing each idea with a unique letter from A to Z. No dis- again than have the pain due to gout”. cussion was permitted until all ideas had been listed. 2. ULT gave them a less restrictive diet: Two of the Subsequently, each item was discussed in an interactive three groups indicated this among the top group format and group participants consolidated items facilitators. Patients said that ULT intake allowed when applicable. Next, all participants were given five them to eat the foods they like in moderation index cards and were asked to identify and rank-order without having the flare-ups. the five responses deemed most important from 1 to 5, 3. Habit/routine: Two of the three groups indicated 5 being the highest score. The participants indicated this among the top facilitators. They mentioned that their preference for important items by rank ordering. taking their ULT was part of the routine, that they The outcome of the process was the mathematical ag- took their ULT along with other medications in the gregation of each member’s score with the highest score morning or the evening, use a pill box to organize corresponding to the top ranking theme for the group. their ULT and that a simple once a day intake makes Rank-ordered results from each nominal group were it easier to take this medication. mapped and compared. Similar to the within-group process, responses were analyzed based on the number Other reasons cited by one nominal group each in- of groups identifying responses with high relative rank cluded the following: ULT helped keep the chronic pain ordering. The transcriptions were examined to identify from gout under control and to avoid the condition all statements made relative to each response and from getting worse and pain from becoming more Singh Arthritis Research & Therapy 2014, 16:R82 Page 4 of 13 http://arthritis-research.com/content/16/2/R82 Table 1 Facilitators for medication adherence to allopurinol of febuxostat among African-Americans with gout Quotes # Votes Group 1 –African American men (four patients) Adversity to pain “If I don’t take it everyday, it (gout) would be back in my foot and anywhere.” 20 “It makes the pain stay away.” “Gout is super painful- I’ll do whatever avoid that pain.” “It hurts so bad, when I had gout.” “I have been shot- I’d rather be shot again than have the pain due to gout.” It is a habit “It’s simple, once a day.” 9 “Once a week, I put all my medications in a compartment in the pill box.” “It’s simple-take it once in the morning.” “Put the pill in the napkin and take it to work.” “It’s only 1 out of the 10 medications and it’s easy.” It solved my problem “When it first happened, I thought I hurt myself, then I was diagnosed with gout; 8 allopurinol solved the problem.” Avoid surgery/complications from other “I had surgery from gout once and it is helping me avoid another- they drained 7 medications gout from my foot.” “Helps avoid prednisone- put on 60 pounds in 30 days.” I do not recognize any bad side effects “I don’t see any side effects.” 7 Can go places that I want to go “Free to go anywhere” 5 “Can go to movie, park” “Have my mobility” “Makes me stay out of bed” Allopurinol gives me a less restrictive diet “Before allopurinol, certain foods triggered gout. Now I can eat anything I want 4 in moderation.” Group 2: African-American men (six patients) I take allopurinol to stop the pain “Prevent, minimize flare-up.” 26 “To be pain-free.” “Help keep the pain under control.” “I hurt so bad, I have to take it.” “The pain is hell.” “The pain was so bad, I couldn’t even walk.” “That’s a given.” It is a habit “I have a habit.” 14 “(it’s a) routine” “I take my meds in the morning- I wake up dry and take my meds with water in the morning.” “I was taking my meds irregular, then over time it became regular.” “Being consistent with my blood pressure med made me consistent with my allopurinol.” Allopurinol is a good medicine that my family “I don’t have to see a specialist.” 13 practice doctor can prescribe “It costs more and I have to drive longer to see a specialist, if I have to go to specialist; (I go) when a medication other than allopurinol is needed.” When I am fine, my family is also “Helps to keep the family to do things that they want to do.” 8 “If I am ok, my family is ok, everything “clicks”.” Singh Arthritis Research & Therapy 2014, 16:R82 Page 5 of 13 http://arthritis-research.com/content/16/2/R82 Table 1 Facilitators for medication adherence to allopurinol of febuxostat among African-Americans with gout (Continued) To keep my mobility “…To keep me walking.” 8 “Gout hit me so bad, both sides, I could do nothing; now I can do things.” “Helps me walk inside and outside.” “Activities I’d like to do.” “I am very active, helps me stay active.” “Let’s me do exercise, bicycling.” “I can go on the treadmill.” “Affects my quality of life positively.” I purchase my meds (including allopurinol) “If I get 30-day prescription, I keep running out.” 7 every 90-days, it helps me not run out “I do mail order for 90-days.” “I get it at Costco.” “90-day is cheaper than 30-day.” I use a pill organizer, and organize my pills “ I have been using it (pill organizer) for years, that’s the one thing that helped, 7 every two weeks “that nailed it.” “Just do it.” “Keep it on the track.” “Very effective.” “You go back and see if you took it- sometimes I find out I didn’t take it.” “It becomes more or less a protocol.” Allopurinol is an everyday medication “This is a medication, we have to take every day to keep it in our system.” 6 “If you get off for 2–3 days, it (gout) is coming back.” Allopurinol gave them a less restrictive diet “I can eat most things I want.” 3 Group 3: African-American men (five patients)* I was requested by my doctor “I have faith in my doctor.” 17 “Think doctors are here for a purpose.” “My doctor knows the best.” “Trust.” Take allopurinol to stop the gout from hurting “The thought of flare-up (is scary).” 17 “The thought of the condition getting worsening, the pain becoming more severe…” “Keeps me from having to rush to doctor’s office.” “You have to take it.” “Since being on allopurinol, I haven’t had a flare for 2 years.” “Take allopurinol to prevent the handicap.” “The thought of condition spreading to other foot.” Because it helps to keep my uric acid in check “The reason gout come is that uric acid builds up in the bone; Now uric acid is where it 14 is supposed to be, that’s why my gout is away.” I do not want to report to my doctor that I was “.. expectations from my doctor (My doc has set expectations).” 8 not taking my allopurinol *4 patients voted, one had to leave prior to voting. severe; ULT avoided complications from other medica- Barriers to ULT adherence in in African-American gout tions such as prednisone; ULT was not associated with patients with low adherence any bad side effects; patients trusted their health care In six nominal groups of 29 African-American gout pa- provider’s recommendation; ULT was easily prescribed tients with a mean age (SD) of 62.5 (7.6) years (range, 60 by their primary without the need to go to a specialist; to 75 years; 16 men and 13 women) with suboptimal and that it helped the patients keep their uric acid adherence to ULT, we explored the reasons for poor ad- under check (Table 1). herence to ULT, that is, barriers to ULT adherence. The Singh Arthritis Research & Therapy 2014, 16:R82 Page 6 of 13 http://arthritis-research.com/content/16/2/R82 following were the top themes, identified as barriers to 6. Refill issues: Four of the six groups listed this among ULT adherence, among the six nominal groups (also, see their top concerns. Patients reported they often ran Table 2). The first four themes were consistent with the out of prescriptions, could not easily figure out patient’s perception of the meaning of the medication which one was due for refill due to their taking and its association with body failure or interference with multiple medications, threw away the bottle before identity relevant functions. calling it in, did not order the refill in time, had difficulty picking up the prescription from the 1. Not convinced that the ULT medication is effective: pharmacy, or felt lazy regarding getting the refill in All six groups listed this among their top concerns. time. Patients reported that they were doing great without 7. Forgetting to take the ULT medication: All six ULT medication, if gout had subsided they did not groups listed this among their top concerns. Patients need to take the ULT medication, other medications, reported forgetting because of other things they had such as indomethacin, worked better for their gout, to do, travel related to their work, being on vacation, gout flare-ups continued despite taking ULT, they the fact that they take so many other pills, trouble did not know whether or not to take their ULT reading labels due to vision problems and the medication during an acute gout flare, they were not interruption of their daily routine. sure whether medication was effective in preventing gout flares, they skipped the medication when they One nominal group each brought up the following in felt better with their gout, they were not sure their top seven concerns, with the first two being con- whether the medication worked for their gout, they sistent with identity-relevant functions. decided whether or not to take the ULT based on how they felt, and they did not feel a difference in 1. Issues related to travel and the need to plan ahead of their symptoms when they missed ULT for a few time: Patients reported not having their ULT with days. them when they were out of town. They also 2. Side effects: Five of the six groups listed this among indicated that they needed to plan ahead to take their top concerns. Patients reported mainly their medication with them or access it through a gastrointestinal side effects such as gastritis, retail pharmacy in another town/place when they abdominal pain, bad taste in the mouth, belching, were traveling. nausea, vomiting and diarrhea, and drowsiness. 2. Medication causing flares: Some patients reported 3. Concomitant medications and intake of too many big flares when they started taking ULT that made pills: We combined these two inter-related concepts them go to the emergency room or experiencing and four of the six groups listed this among their attacks too often after starting ULT. top concerns. Patients were concerns about taking 3. Patient preference for alternative medicine: Patients too many pills and associated frustration, taking too indicated that they decided to take cherry juice many milligrams in total being detrimental to their instead of allopurinol, or eating cherries. body, side effects from other medications (nausea) 4. Competing priorities: Patients cited being busy with making it difficult for them to take the ULT and multiple jobs and the need to work all the time as medication interactions. barriers to the regular intake of ULT. 4. Pill size and swallowing difficulty: Two of the six groups listed this among their top concerns. Patients Discussion complained about the large size of the pill, the need To our knowledge, this is the first qualitative study to to break the pill to swallow it, problem swallowing assess facilitators and barriers to ULT adherence in due to vocal cord disease and the need to swallow African-Americans with gout and the first study to enroll one pill at a time when we are prescribed multiple gout patients with low and high ULT adherence. The main pills per day due to the dose needed. barriers to optimal ULT adherence were doubts about the 5. Cost: Five of the six groups listed this among their effectiveness of ULT, concerns about cost and side effects top concerns. Patients were concerned about (short-term and long-term cumulative), the impact of con- copayment with limited resources and the need to comitant medications and of taking too many pills, for- fill multiple medication prescriptions, the expensive getfulness, challenges with refilling the prescriptions on nature of the ULT (especially febuxostat), the need time, pill size and difficulty in swallowing, competing pri- to ration the pills due to limited income and the orities, patient preference for alternative medicines (such challenges with copayment after retirement or losing as cherry juice or extract) and frequent work-related job insurance which previously had covered the travel. The main facilitators to ULT adherence included ULT. patient realization that they needed to take ULT regularly Singh Arthritis Research & Therapy 2014, 16:R82 Page 7 of 13 http://arthritis-research.com/content/16/2/R82 Table 2 Barriers to allopurinol or febuxostat adherence among African-Americans with gout Quotes # Votes Group 4: African-American women (six patients) Not convinced that the medication is “I felt it wasn’t helping me.” 20 effective and should be taken daily “When I missed a few days nothing changed.” “Taking it did not make any difference.” “If it is doing good then why should you have to take additional medications?” “I would miss days and not feel any different from when I was taking it.” “Maybe it was a dosing issue?” “I have intermittent flare ups and I have learned to use colcrys as a treatment.” Forgetting to take the medicine “I’m not going to forget the gout pill during an active attack. It more of a mental thing (to forget 21 the routine otherwise) that I think its not doing any good.” “Sometimes I will just plain forget because I am busy etc.” “If I forget I will take it later in the day. I go ahead and take it because I do not want to flare up.” “I will forget because I am taking so many other medications.” “Can’t remember if I have taken it that day so I will not take an extra because I do not want to take double.” “If your daily routine is interrupted then it is easy to forget because you are used to taking it at the same time each day.” “Did I take it, did I forget?” Side effects “I have gastritis. Switched my times taking it now and night with milk and I have not 15 had anymore episodes.” “Sometimes it will make me sick. I will throw up.” “I just got tired of being sick on my stomach.” “You may wonder what you have eaten but it only happens when you take that pill.” “I had abdominal pain.” “…(it) caused diarrhea.” Other concomitant medications “Too many pills to take for other conditions.” 14 “Additional gout medications and still having flares.” “All of my medications are grouped together. If I miss one I miss them all.” “I keep thinking about the milligrams that I am taking. I don’t want to hurt my body. I am taking to many milligrams.” “Sometimes I feel “lazy” because I take so many pills.” Concern about drug interactions I don’t know what affect the other medicines have on my gout medications. Is that 11 what’s making me sick. I don’t know. Cost “I have to be able to get my other prescriptions, and this gives me trouble due to cost.” 5 “Trying to balance between my medications and my daughters meds makes it very difficult.” Travel and planning for travel “Sometimes I am out of town, and did not have my medication with me.” 4 “I take my whole bottle so that I will not do without.” “My medication come from CVS so I can get them from most places in the US.” Group 5: African-American women (seven patients) Cost “My insurance does not cover this.” 27 “I am on fixed income, $77 for 1 month, sometimes, I don’t have money for copay.” “Doctor has to call in the medication despite the prescription- due to insurance company.” Forgetting to take the medicine “Problem with eyes, reading the label is not easy taking too may other medications.” 21 “Usually took it every day before work; Sunday and Saturday is an issue, since I don’t go to work.” “Out of routine.” Singh Arthritis Research & Therapy 2014, 16:R82 Page 8 of 13 http://arthritis-research.com/content/16/2/R82 Table 2 Barriers to allopurinol or febuxostat adherence among African-Americans with gout (Continued) Other concomitant medications “I get nausea from other medications.” 13 “Gout pill is the last one I take. So when I am nauseous from others, I skip.” Too many medications “I did not want to take it because I was taking so many other medications.” 10 “I am tired of taking medications.” “Recently have had very high BP in 200 s, got a lot of pills that required more allopurinol.” Medication refill issues “It may have been that I could not pick up the prescription from the pharmacy.” 9 “When I ran out, did not fill it as soon as I could.” “Felt lazy.” “Too may things to do…” “I have negligence…” Alternative medicine choices “I read cherry juice was god, so I took cherry juice instead of allopurinol.” 3 “I don’t like to take medicine.” “I tried eating cherries…” Not convinced that the medication is “Not hurting in weeks, So I thought I did not need to take it.” 6 effective and should be taken daily “If I skip it for a week, I feel flare coming on, but less than that can’t see a difference.” Large pill size and vocal cord problems “Pills are big, now taking 5 other pills.” 16 with swallowing “I break the pill up due to swallowing problem.” “Sometimes have problem swallowing because of vocal cord problems.” Group 6: African-American men (three patients) Side effects “It makes me sluggish along with my other medications- not knowing which medication 11 causes drowsiness.” “Bad taste in mouth.” “Belching” “I am a retired entertainer, you don’t want to be drowsy, you want to be alert.” “I used to play at church. You can’t do that when you are sluggish. I say “Amen, I am out of here.” Too many medications “I have so much on my mind due to the all the pills I have to take.” 9 “My mind comes and goes, I was in the military.” “Getting frustrated with the routine of taking so much medication- I just want to stop.” Not convinced that the medication is “When I feel better, I don’t take it.” 8 effective and should be taken daily “If everything is good, you feel better in the morning – I don’t need it today.” “If I could not do it today (take my allopurinol), I’d be ok.” “If I feel better, I think I don’t need it today.” “If better in the morning, I take my allopurinol in the afternoon.” Forgetting to take the medicine “When I don’t see in the pill box, I miss it.” 8 and confusion “Usually I set pills out at night; I take 12 pills, so I have 2 pill boxes, sometimes I forget which day it is and forget to take it.” “I have a pill box too, if I am feeling ok, I am not going to take 2–3 of them.” “Sometime I can’t remember, because I took so many pills.” “I take 6 pills a day- sometime I can’t remember, because I take so many pills.” “I take 7 pills, if I am tired, I can’t remember, whether I took it.” Cost/economic impact “Very expensive.” 5 “Copay was $20- I have to ration the pills; I go with the pill I need the most, when I do that.” “I pay $40 co-pay.” “I live in the retirement home; so (what I have left for) my rent goes up or down with my copays.” “My income changed all of a sudden, when I lost my job, it was difficult.” Singh Arthritis Research & Therapy 2014, 16:R82 Page 9 of 13 http://arthritis-research.com/content/16/2/R82 Table 2 Barriers to allopurinol or febuxostat adherence among African-Americans with gout (Continued) Pill size “Pill too big” 3 “Sometimes it’s hard for me to swallow, I take 600 mg.” “The 300 mg pill is bigger than 100 mg. I had to take a lot of water to wash it down.” “Have to take one pill at a time.” Side effects and problems with taking “When the pain is very severe, I can’t eat and I don’t take pills without eating.” 1 it on an empty stomach “Makes your stomach queasy.” “I took allopurinol later in the day without food, stomach starting feeling bad.” Group 7: African-American men (five patients) Forgetting to take the medicine “It could be business travel, just a busy day, or hey I forgot that day. I have started putting 16 my medicine in the weekly pill distributor. I also take blood pressure medicine and will forget it from time to time. I will forget my gout medication more regularly. Both must be ordered and for some reason I will remember to order the blood pressure medication more often. I don’t tend to forget it.” “It is easy to forget on a vacation day.” Medication causing the flares “(allopurinol) caused me to have big flare where I had to go to the emergency room.” 14 “I just don’t take it. - the attacks were coming too frequently. To the point I could not get out of the bed.” Not convinced that the medication “Would work at times but at others it would not.” 11 is effective “I would still have flare ups. (I had been on it for at least 2 months then again within the first 30 days).” Side effects “…Made me nauseated. – felt like I wanted to throw up.” 10 “Hard on the stomach.” “It just don’t feel right.” “Its better when I drink milk, but I’m not sure if that is causing me to flare more.” “Continuously in the bathroom issue. (Diarrhea) after the second day in my system it would start.” “Diarrhea at least once a day.” Refill issues “….mainly my fault.” 10 “I just didn’t order it in time.” Cost/economic impact “Uloric worked fine with the gout flares, but due to my insurance the medication 8 was expensive. Additional paperwork is required yearly to get it approved.” Too many pills “Plus taking it on top of all the other mediation I take (high blood pressure etc.).” 6 “Too many meds in my system.” “Started off twice a day moved to once.” “With the other medications it just does not do me any good.” Group 8: African-American men (six patients) Not convinced that the medication is “It don’t work for me.” 27 effective and should be taken daily “Took Indocin for years that helped. I took allopurinol, didn’t help, I was having more pain while taking allopurinol compared to when I was taking Indocin. Indocin worked better.” “It took too long to clear up the pain.” “I would still have flare ups. I had been on it for at least 2 months.” “If gout has subsided, I did not need to take it, so I stopped.” Side effects “Because of the side effects of allopurinol.” 17 “Because of the gout infection in my elbow: My elbow got sore, I was told to take allopurinol, pain got worse, got fluid out of the elbow, diagnosed with infection, told it was due to allopurinol, got antibiotics in the hospital and then at home –have not taken allopurinol since then.” “The doctor took me off of it due to side effects.” Singh Arthritis Research & Therapy 2014, 16:R82 Page 10 of 13 http://arthritis-research.com/content/16/2/R82 Table 2 Barriers to allopurinol or febuxostat adherence among African-Americans with gout (Continued) Cost/Economic impact “Money- It was Money.” 12 “Have to take a lot of meds, copay went up, have to choose.” Refill issues “I forget to refill.” 11 “I threw away my bottle before I calling.” “Sometimes forget to go and pick up from pharmacy.” “I have so many meds that I take, its’ not easy (to remember which one is due for refill).” Forgetting to take the medicine “Forget to take it.” 8 “Forget to take it on time.” “Sometimes on the go, can’t take any of my medications.” “Most of the time, I take my medication after breakfast, if I don’t see the pill box at breakfast, I forget at times.” Group 9: African-American men (two patients) Not convinced that the medication “Doing great without medication.” 9 is effective Refill issues “Prescription ran out- didn’t fill it.” 9 Competing priorities “Working all the time.” 5 “I have to get to my jobs and getting to work (keeps me busy).” Forgetting to take the medicine “Keep forgetting (to take it).” 5 “…because of other things I have to do.” to prevent gout flares, to prevent the severe pain and convinced that ULT was needed every day or was help- handicaps associated with acute gout and to prevent pain ing their gout vs. high adherers who had the very oppo- from becoming chronic/severe, the patients organizing site experience and perception, that is, the ULT helped their pills and their routine so that they would not forget them avoid severe pain and suffering. Low adherers cited to take their ULT, the patient’s ability to have fewer dietary lack of knowledge and communication from physicians restrictions and the ability to eat foods they liked in mod- regarding the usefulness of ULT, an important observa- eration once they were taking ULT regularly, lack of side tion from our study, complimenting a survey study find- effects, avoidance of side effects from alternatives such as ing that knowledge deficits were common in gout corticosteroids, trust in physicians, and avoiding the need patients [14]. High adherers had greater trust in their to seek frequent emergent/urgent care or a subspecialist’s physicians and saw the adherence to ULT as a way to care. Several findings from this study deserve further avoid more doctor visits, keep their uric acid levels in discussion. check and prevent chronic joint damage that reflected It is now well-known that compared to Caucasians, more knowledge about gout and treatments. African-Americans not only have a higher prevalence of The current study also provides an in-depth examin- gout [1], but also have more severe gout with higher ation of ULT adherence in African-Americans. Some baseline sUA, worse ULT adherence and lower likelihood quotes from patients were eye-openers; for example, one of ULT treatment and the achievement of target sUA veteran who had served in the armed forces said, “I have <6 mg/dl [17-19]. This disproportionate burden of gout been shot. I’d rather be shot than have my gout attack and the lack of any previously published studies on racial again”, signifying the severe pain of gout and its impact minorities were the key motivations for our study. on patients and why it is so important to adequately Several findings in this study are novel. Both low and treat gout. This study adds knowledge to the area by high adherers to ULT identified issues related to body identifying additional previously not-described barriers, medication, identity-relevant functions (interference or such as the impact of concomitant medications and of facilitation) and meaning imparted to the mediation as taking too many pills, ULT pill size, swallowing diffi- culty, patient preference for alternative medicines, key facilitators and barriers to ULT adherence, that fit our theoretical model, that is, the trajectory model with travel-related and refill issues, and competing priorities. the BBC chain [23,24]. The themes were opposite in se- These findings indicate that non-medication alternatives are considered true alternatives to pharmacotherapy by veral common domains. A key difference in low vs. high adherers was their understanding of what the medication patients and should be discussed with patients with gout. could/would do for them. The low adherers were not Now that these barriers have been identified, a further Singh Arthritis Research & Therapy 2014, 16:R82 Page 11 of 13 http://arthritis-research.com/content/16/2/R82 study into how to develop interventions targeting these knowledge that we plan to investigate next. Other studies barriers is needed. Patient education and patient- have shown gender differences in medication adherence physician communication can target several barriers and with women having slightly lower adherence than men has the potential to improve the outcomes in African- [37-39]. It remains to be seen if this is true in the case of Americans with gout. Gaps in patient and physician gout as well, a predominantly male disease. knowledge have been demonstrated in addition to their Our study has several limitations. While we reached sat- perception of treatment related issues in gout, including uration for our low-adherers with the six nominal groups, non-adherence [15]. This indicates that education initia- one may wonder if we reached saturation in high- tives may also need to target both patients and health adherers. We were able to identify and successfully recruit care providers to reduce the differences in perceptions. fewer patients with ULT adherence of 80% or more in our Other key findings from this study based on studying study, even after extensive telephone screening. However, facilitators to high ULT adherence, may help educate low- several themes were noted to be repeating in the current adherers and design interventions. African-American gout sample of high adherers, supporting the notion that satur- patients, who were our success stories (high-adherers) dif- ation can be attained with two to three nominal groups, as fered from those with poor ULT adherence (low-adherers) it seemed to be in our case. The number of high adherers in several key aspects, which also map well to the Health recruited in this study is the largest nominal group sample Belief Model [36]. This model emphasizes that individuals studied to date. Second, this in-depth study has findings can change their behavior if they consider themselves sus- applicable to African-Americans with gout. We over- ceptible to disease (chronic pain), realize the disease’scon- sampled for women with gout (another understudied sequences (frequent flares) and perceive that engagement population) to improve the study’s generalizability. Gene- in a particular behavior (ULT adherence) will be beneficial ralizability to Caucasians was not our goal, since at least in preventing negative disease consequences and disease two small studies exist in Caucasians and our focus was severity (preventing flares, pain, suffering [36]. Compared disadvantaged minorities. However, several themes from to low adherers, gout patients with high ULT adherence: earlier studies with Caucasians were replicated in this (1) understood their disease severity, including gout re- study, indicating some applicability to Caucasians. Study lated pain and suffering, better (better perception of dis- strengths included study of a difficult to reach, under- ease severity and personal susceptibility); (2) did not have served and understudied group that bears a dispropor- misconceptions regarding ULT and had a better percep- tionate burden of gout and the use of NGT to obtain an tion that ULT benefits outweigh risks (side effects), that is, in-depth answer to the specific study question. considered the balance of perceived barriers to treatment and benefits from treatment favorable to them and (3) had Conclusion effective cues to prompt action of regular ULT intake In conclusion, this study provides an in-depth insight into (using a pillbox; taking medications at the same time; facilitators and barriers to ULT adherence in African- health belief model). Thus, they had overcome the same Americans with gout. Several new themes were identified barriers that were faced by their peers that had poor ad- in this study. This new knowledge should serve as a foun- herence to ULT. Thus, if an intervention can incorporate dation for research of behavioral and non-behavioral in- ways to encourage several behaviors practiced by the terventions to improve ULT adherence in minorities with high-adherers, it has the potential to improve ULT adhe- gout. Such studies have the potential to improve gout care rence and gout outcomes. and outcomes in patients suffering from this disease. Our study is the first to confirm that several barriers to Abbreviations optimal allopurinol use in Caucasians [15,16] are also bar- BBC chain: Body, Biographical time and Conceptions of self; ICD-9- riers to optimal allopurinol use in African-Americans. In a CM: International Classification of Diseases, ninth revision, common modification; IRB: Institutional Review Board; NGT: Nominal group technique; qualitative study of 26 Caucasian patients with gout, du- NSAIDs: Non-steroidal anti-inflammatory drugs; SD: Standard deviation; ring the phone interviews, gout patients cited financial sUA: serum urate; ULT: Urate-lowering therapy. concerns, forgetfulness, worsening of gout, potential side Competing interests effects, lack of information and doubts about the length of There are no financial conflicts related directly to this study. JAS has received treatment, as reasons [15]. In another study of 20 UK gout research and travel grants from Takeda and Savient, and consultant fees patients (15 men, 5 women), during the semi-structured from Savient, Takeda, Regeneron and Allergan. interviews with gout patients that covered a wide array of Acknowledgements topics, patients reported non-adherence often due to con- I thank Dr. Isabel Scarinci for her comments on this manuscript, Bridgett cern about the side-effects or the belief that gout did not Alday for contacting patients and providing support for conducting the nominal groups, Ana Oliviera and Aseem Bharat for help conducting the warrant any long-term treatment [16]. Our study design nominal groups and Mary Elkins for the administrative oversight. I thank the did not allow us to compare the barriers to gout medica- patients and several colleagues who provided informal input into drafting tion adherence by gender. This is an important gap in our the question for the nominal groups. 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Curr HIV/AIDS Rep 2011, 8:277–287. doi:10.1186/ar4524 Cite this article as: Singh: Facilitators and barriers to adherence to urate-lowering therapy in African-Americans with gout: a qualitative study. Arthritis Research & Therapy 2014 16:R82. Submit your next manuscript to BioMed Central and take full advantage of: • Convenient online submission • Thorough peer review • No space constraints or color figure charges • Immediate publication on acceptance • Inclusion in PubMed, CAS, Scopus and Google Scholar • Research which is freely available for redistribution Submit your manuscript at www.biomedcentral.com/submit

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