Introduction

Gout is the most common type of inflammatory arthritis in adults. Gout affects 8.3 million Americans [1] and 5% of the US veterans [2]. It leads to frequent emergency room visits [3] and costs 20 billion dollars annually [4]. Despite the availability of effective treatments, patients with gout do not receive good-quality gout care [2, 5–10] as recommended by gout treatment guidelines [11, 12]. Quality gaps are worse in racial minorities and women [13]. Significantly lower rates of urate-lowering therapy (ULT) prescriptions and ULT adherence are seen in African Americans [14, 15] compared to Caucasians and in women compared to men [7, 16]. Patient perceptions can impact gout outcomes. An example is that negative or pessimistic patient views about gout are associated with poorly controlled gout, low adherence to ULT and higher disability [17]. This implies that better insights into patient experience and perception of gout are needed, especially in African Americans.

Gout has a significant negative effect on patient’s quality of life (QOL) [18–21] and effective treatment improves QOL [22, 23]. Therefore, it is critical to understand the specific impact of gout on patients’ lives. To date, qualitative research in gout has focused on examining patients’ knowledge related to gout, patterns of treatment and the barriers to treatment adherence [24–26]. There are at least three knowledge gaps related to the effect of gout on QOL: (1) qualitative studies have been done primarily in Caucasian men with gout; none included African Americans [24–26]; (2) only 11 of the 46 gout patients in all previous studies combined were women [24, 25], indicating the need for more research into women with gout; and (3) most studies have assessed multiple aspects of gout, including treatment, knowledge, disease monitoring, outcomes and patient and clinician perspective, often in a setting of a single study [24–26]. Thus, there is a lack of in-depth studies assessing the impact of gout on QOL.

The lack of research in African Americans with gout, a racial group with higher disease prevalence and burden of gout than Caucasians (5% versus 4% in the US), is concerning [1]. Although gout is not as common as it is in men, the prevalence is 2% in US adult women [1], twice that of rheumatoid arthritis at 1% [27]. A literature search using the same terms (quality of life, women) found eight publications in gout (none with original data, none relevant) versus 213 publications in rheumatoid arthritis, indicating the lack of recognition of the impact of gout on women.

Corbin and Strauss proposed the trajectory model to understand the impact of illness further refined by Charmaz and others. The model includes three components - body, biographical time (explicit narrative that gives meaning and purpose to a person’s life) and conceptions of self (constructs of self-image and identity, such as role identity, social identity et cetera), that is, the BBC chain [28, 29]. The model indicates that only when body, biographical time, and conceptions of self are in balance, interactively stabilizing and reinforcing one another, does one enjoy a sense of health and wellbeing [28–30]. When this chain is destabilized, one has the sense of being ill. A chronic disease may lead to progressive loss of self from body failures, failed performances and social isolation [31]. The study question is based on this theoretical model and the study findings were mapped to this model. The objectives of this study were to: 1) assess the impact of gout on patients’ QOL; and (2) explore gender and race differences in the impact of gout on patients’ QOL. We oversampled for African Americans and women to get a diverse perspective.

Methods

Patients

The Institutional Review Board at the University of Alabama at Birmingham approved the study. Patients with at least one outpatient visit between January 2011 to September 2012 to our outpatient clinic, with an International Classification of Diseases, ninth revision, common modification (ICD-9-CM) code for gout, that is, 274.xx, were eligible and invited for study participation on the phone. Consecutive patients were selected. African Americans and women were oversampled, due to the lack of qualitative research in these groups. Patients were invited for 1.0 to 1.5 hour sessions. Study participants received free parking, refreshments during the session and a $30 check. Patients provided consent prior to study initiation.

Nominal group technique (NGT) sessions and analyses

Patient nominal groups were conducted to understand the impact of gout on the patient’s QOL and evaluate gender and racial differences. NGT is a variant on traditional focus group with methods aimed at developing an inclusive list of issues related to a specific question, then soliciting feedback on the relative importance of these lists through rank-ordering procedures [32, 33]. NGT has been used successfully in a variety of medical conditions with assessments from experts, professional caregivers and patient groups [33–39]. NGT taps the experiences, skills, or feelings of the participants by promoting an even participation. Thus, the data generated usually provide a more valid representation of the implicit views of the group than would be achieved with a focus group format. Generally, two to three groups are considered enough to reach saturation.

Given that QOL is not a lay-person concept, careful consideration was given as to how to ask the question about how gout affects patients’ QOL. After several discussions with pyschometricians, physicians, and patients with gout in the clinical practice, the question was finalized as, ‘How does gout affect your life?ʼ The nominal groups were stratified by gender and race/ethnicity. The nominal group leader (JAS), an epidemiologist experienced in conducting nominal groups [40, 41], conducted the nominal group sessions. Research assistants (BA, AO or AB), provided administrative support, recorded the discussions and took notes. Each session started with introductions followed by asking the participants if the main question was clear and if they had any questions prior to starting the group meeting. All queries were answered before the start of each NGT session. The main question was written on flipchart and also printed on top of a blank sheet of paper provided to each participant.

The NGT process consisted of the following discrete steps that were completed in 60 to 70 minutes, as planned: (1) participants briefly and independently generated as many words or short phrases as possible in response to the question on a sheet of paper with the question (10 to 15 minutes); (2) participants nominated a single response in a round-robin fashion, which was recorded on a flip chart in large letters visible to the group participants by the group leader; responses are nominated until all identified by any group member were recorded; (3) once the list was completed, participants discussed and elaborated each response and where appropriate combined responses deemed alike; and (4) all participants were asked to identify and rank-order the five responses deemed most important from 1 to 5, with 5 being the highest score on the index cards. All scores were totaled. A rank-order was created based on the total scores, with the highest score corresponding to the top rank.

Rank-ordered results from each nominal group were created. Similar to the within-group process, responses were analyzed based on the number of nominal groups identifying the concept with high relative rank-ordering. A general consensus rank-ordered list was created. Transcriptions were examined to identify all statements made relative to each response (discussions directly connected, solutions generated, and any point where the response was brought up subsequently) and led to the creation of a comprehensive list of statements. To ensure that nominal groups were performed until saturation, as groups were completed, responses were compared to determine overlap. When significant overlap was noted, saturation was confirmed.

Results

Ten nominal groups were conducted with 62 gout patients: 60% were men and 40% women, 64% African American and 36% Caucasian. The mean age was 65.1 years (standard deviation, 10.8). Three nominal groups each were conducted with African American men, African American women, and Caucasian men and one nominal group with Caucasian women. Saturation of themes was achieved by the third group in each group. The mean age (standard deviation) of the four cohorts that participated in nominal groups were: African American men, 61.8 (12.4); African American women, 68.9 (10.4); Caucasian men, 63.8 (12.6); and Caucasian women, 61.3 (2.3).

Overall impact of gout on quality of life

Several themes emerged. The top seven (or so) themes/concerns from each group are listed in Tables 1 and 2. In the section below, we list the top seven concerns nominated by more than one nominal group. These concerns are categorized as identity-relevant performances with or without loss of self versus body failures, although some themes may fall into more than one category.

Table 1 Top ranked seven concerns* among African American and Caucasian men
Full size table
Table 2 Top ranked seven concerns* for African-American and Caucasian women
Full size table

The top concerns/domains noted by the patients were mapped to the limitation of identity-relevant performances with a progressive loss of self, exemplified by the following themes.

Effect of gout flare on daily activities and the ability to do things

All ten groups listed this among their top concerns. Gout affected: (1) activities of daily living: walking, getting out of bed, going to bathroom, standing, climbing stairs, combing hair, cooking; (2) other instrumental activities: driving, writing, gardening, cleaning dishes; (3) the ability to take care of family; and (4) social activities such as going to church, traveling, going out of town.

Effect on work ability, and productivity and employability and at home productivity

Eight patient groups listed this among their top concerns. The ability to function normally at work, work productivity and relationships were affected. Several patients lost employment due to gout. Women reported decreased productivity at home and interference with their ability to take care of their families and the house.

Severe pain during a gout attack and its impact on physical and emotional health

This was among the top concerns in eight nominal groups. Patients had problem with physical (inability to get out of bed) and emotional health (crying due to pain) and systemic effects of severe gout pain such as the loss of appetite due to pain. All eight groups described the impact of gout on physical health. Five groups (four African American and one Caucasian) highlighted the impact of gout on emotional health.

Dependency on family and others

Five patient groups listed this among their top concerns. Patients reported needing help from family members during gout flares for household work (for example, with cooking), ambulation and for getting to the doctor’s office.

Difficulty with shoes

Four patient groups expressed difficulty in wearing shoes, going to church with home shoes on and the need to wear a wider shoe, shoes of a larger size or walk barefoot sometimes. Some patients had to stop wearing fancy shoes and heels.

Interference with sexual function

Four patient groups listed this among their top concerns (all male nominal groups). Patients described that gout flares affected their sexual function negatively, leading to problems in having sex as well as low/no desire to have sex, and gout affecting their marital relationship negatively.

Sleep disruptions

Four patient groups reported sleep problems due to gout, both an altered sleep pattern in general due to gout and severe disruptive effect of gout flares on sleep.

Bringing normal day to a halt and unpredictability

Two groups ranked this among their top concerns. Patients mentioned the need to stop doing everything when the flare hit. Unpredictability of gout flare was very concerning to patients. Patients said that gout flare ruined their plans and they were uncomfortable with the unpredictable aspect of gout flares.

Made life change in a lot of ways

One patient group pointed out that their life changed in a lot of ways due to gout. Another patient group highlighted that gout led to the lack of healthiness. One patient had a divorce due to his inability to do outdoor activities with his wife due to frequent gout flares. Patients had to accept a lot of things that they did not want to, and the experience with gout ‘…made them change the way they carried themselves out.ʼ

Effect on hobbies and social life

One patient group said that gout affected not only their ability to continue their hobbies including fishing, hunting, biking, riding motorcycles, playing music and running, but also with the ability to go to dinner, movies and church.

Seeking people like them in social circles

One patient group described that gout was shaping their social and work interactions and that it was becoming an integral part of their social interactions. Patients were seeking others with similar conditions and bonding with them.

Other concerns and domains were consistent with body failure, as described in the trajectory model, as noted below.

Joint swelling, tenderness, heat and stiffness

Six groups listed this among their top concerns. Patients reported joint swelling, heat and tenderness during flares, residual joint swelling after the flare and joint stiffness.

Food restrictions

Six groups listed this among their top concerns. Patients reported having to give up foods that they enjoyed (red meat, shellfish, seafood), the need to stay disciplined with food and alcohol, the uncertainty about exactly which foods to avoid and the discomfort with dietary changes that they had made and the fear of (specific) food items causing flaring-up of gout.

Medication-related issues

Six patient groups listed this among their top concerns. Patients reported the inconvenience of taking pills daily, the need for multiple medications, the side effects from medications and the concern of potential long-term side effects. In one group, three of the top seven concerns were related to the negative impact of medications on QOL.

Impact on other health conditions

Two patient groups were concerned about the impact of gout on their other health conditions, including hypertension, conflicting messages from doctors and their concern for drug-drug interactions.

Gender differences in the impact of gout on lives of patients

All four female nominal groups and only one of the six male nominal groups mentioned problems with shoes. Similarly, two of the four nominal groups in women, but none in men, mentioned joint/limb deformity due to gout. Dependency concerns were mentioned by three of the four nominal groups in women, compared to two of the six nominal groups in men. Sex difficulties due to gout were mentioned in none of the groups in women and four of the six groups in men.

Race differences in the impact of gout on lives of patients

Compared to Caucasians, more African American groups ranked the following among their top seven concerns: (1) dietary restrictions and difficulty with eating certain foods due to gout (red meat, shellfish, seafood, alcohol), 0/4 versus 6/6 groups; (2) severe/extreme pain, 0/4 versus 5/6 groups; (3) gout bringing the day to a ‘haltʼ, 0/4 versus 2/6 groups; (4) effect on emotional health/irritability, 1/4 versus 4/6 groups; and (4) the need to use canes/crutches during flares, 0/4 versus 2/6 groups. On the other hand, Caucasian groups were more likely to report the impact of gout on work productivity among their top seven concerns, 3/4 Caucasian groups versus 2/6 African American groups.

Discussion

This is the first qualitative study to focus on the impact of gout on QOL in African Americans and women with gout, both understudied populations. An elegant previous study in 11 men with gout identified three themes - the lack of knowledge related to gout, the progressiveness of untreated gout and the impact of disease (pain, dependency on family members, isolation, work disability) [26]. The concept covered was broad and diverse and women were not included. Our study builds on this foundation [26] and adds significant knowledge to this area. Other qualitative and quantitative studies have covered an even wider range of gout-related issues including treatment, knowledge, disease monitoring, outcomes and patient and clinician perspective within each study [24, 25, 42]. The emergence of clinical trial and survey data showing QOL deficits in gout patients [18–23] indicates that we need a better understanding of the patient perspective of the impact of gout on their lives.

What does this study tell us that we did not already know? This is the first study to describe differences in QOL by gender and race in patients with gout. Compared to Caucasians, African Americans with gout were somewhat more likely to report dietary restrictions due to gout, associated emotional burden, severe pain during gout flares, the need for canes/crutches during flares and gout bringing their day to a halt. This indicates that the patient experience of gout may differ by race. Gout severity may be higher in African Americans, a hypothesis that needs to be tested in future studies. African Americans have a lower rate of use of urate-lowering drugs compared to Caucasians, which may indicate less optimal disease control in African-Americans with gout [14]. This may lead to higher disease burden and a greater impact on QOL.

Women were more concerned about the difficulty with footwear, dependency and joint deformity, while men were more concerned about interference with sexual activity. These gender differences might reflect different social roles and differing priorities. The somewhat higher mean age of women than men with gout (68 versus 63 years) may also have contributed to these differences. To our knowledge, this is the first study with an adequate number of minorities and women to allow such an analysis. Whether these findings also indicate a difference in disease manifestation by gender needs to be examined in future studies.

Our study highlights a major and profound impact of gout on patients’ QOL. Several aspects of impact of gout on patients’ lives have not been previously reported, including the effect of gout on sexual function, sleep, hobbies, employability, relationships etc. Patients recognized the impact of gout flares on the desire to have sex as well as problems having sex. Gout patients described sleep disruption, with problems falling asleep and gout flares waking them up. A recent clinical study showing an independent association of gout with sleep problems [43] and a pre-clinical study showing altered rapid eye movement sleep and total sleep time after an intra-articular injection of uric acid [44] are highly supportive. Sleep disturbances are common in rheumatoid arthritis [45, 46], another inflammatory arthritis, and respond to treatment with disease-modifying agents that target cytokines [47]. It remains to be seen if effective treatment of gout can reduce sleep problems in gout patients.

Patients described a significant disruption of lifestyle due to gout. Patients experienced gout as a life-changing event leading to the loss of job, and some had to apply for disability. These are major life events and signify that the impact of this disease can be devastating in many patients. Patients also needed crutches and walking aids during acute gout flares and felt that they were aging prematurely. Our study confirmed the impact of gout on patients’ lives recognized in the earlier study [26], namely, severe pain, dependency, work disability, dietary restrictions and social isolation. These findings substantiate the disease burden and the broad impact on patients’ lives.

What should change in the clinical practice? These findings may not surprise rheumatologists. The impact of gout on patients’ lives may not be as apparent to primary care physicians, where most time during outpatient visits is spent discussing and managing other chronic co-existent conditions (for example, heart disease, hypertension), with little time left to assess the impact of gout. Our study indicates that due attention should be paid to gout-related symptoms and associated disability, due both to gout flares as well as chronic gout, given its profound effects on patients’ QOL.

What are the implications for research? Low rates of appropriate gout treatment [2, 5–10], and considerable suffering attributable to gout [18–23], in conjunction with our study findings, imply that we need effective, novel interventions, to optimize gout management, for example, a nurse-led gout clinic [48]. Very few areas of medicine are as well-suited for rigorous translational research as gout.

Our findings were consistent with our theoretical model that proposes that an illness impacts a person when the BBC chain is destabilized. In particular, the themes/domains identified most commonly by the patients mapped to either identity-relevant performances with a loss of self or body failures; the most disruptive to the BBC chain ranked the highest. This finding also supports the utility of this model in a chronic musculoskeletal condition. Several aspects of impact of gout on patients’ lives (work productivity, job performance, social life) were similar to, but more severe than those described by Lambert et al. in patients with osteoarthritis [49].

The study findings must be interpreted considering the study strengths and limitations. Our study, purposefully oversampled for African Americans, is representative of patients with gout [50]. Our goal was to study an underserved and understudied population, that is, African Americans with gout. However, the majority of the patients were men, which is representative of this condition. Enough nominal groups were conducted within each strata of race and gender to achieve saturation, with a minor exception of Caucasian women, where only one nominal group could be conducted. This was due to the availability of very few Caucasian women with gout for study screening, which mirrors the epidemiology of gout in the US [1]. Another limitation was that disease characteristics (disease duration, flares, gout medications et cetera) and post-menopausal status were not obtained for the patients. This limits our ability to hypothesize whether the gender differences might be related to menopausal status. The study strengths include a community clinic-based sample; focus on a single question and inclusion of a large number of African Americans and women with gout.

Conclusions

In conclusion, qualitative research assessing the impact of gout on patients’ lives and how this differs by gender and race was conducted. A significant impact of gout on patients’ lives above and beyond acute pain and functional limitations with gout flares was evident, including the impact on sexual function, sleep, social life, emotional health, hobbies and footwear. Most concerns expressed by patients mapped to our proposed trajectory model with the BBC chain. Several differences in the impact of gout on QOL by gender and race were noted. Future studies should explore the potential underlying mechanisms of these patient-identified QOL deficits and design interventions targeting these mechanisms.

The University of Alabama at Birmingham’s Institutional Review Board (IRB) approved this study and all investigations were conducted in conformity with ethical principles of research.