This formative research showed that gout had a significant impact on relationships and sexual activity of people with gout. The physical impact of gout on intimacy was the top-ranked concern across all nominal groups by the number of votes (28%), as well as the number of nominal groups ranking it the highest, eight of the 14 nominal groups. Gout impacted relationship and intimacy in both men and women with gout. With minor exceptions, we did not note any significant differences in the top concern related to gout by patient gender. These data provide the patient perspective of the impact of gout on intimacy. Inclusion of African-Americans and women in our study sample makes these findings more generalizable.
Studies in other inflammatory arthritides reported that pain, physical disability, joint deformity and concomitant depression were associated with sexual dysfunction [17,18,19,20]. Studies in men with gout showed that gout was associated with more erectile dysfunction [8,9,10]. No data on sexual impact are available for women with gout. Our formative study advances the field by providing quantitative and qualitative data on sexuality in people with gout, and including women in our study, both first to our knowledge.
Data from our nominal groups mapped to the generic conceptual framework proposed by Verschuren et al. [14]. This framework considers sexuality to be a multifaceted phenomenon, affected by organic, hormonal, and psychosocial factors, and that chronic illness involves physical symptoms and psychosocial stressors. Several themes and subthemes mapped to the key constructs of physical condition, psychological well-being (two top-ranked themes in our nominal groups were similar – physical/emotional impact on intimacy), and relationship, in the conceptual framework [14] (Fig. 1). The current study found that disease and/or treatments impact sexual function in patients with gout. Gout is associated with a higher risk of metabolic syndrome [35], which might also contribute to sexual desire and performance in gout. Mapping our data to this framework not only provides insight into possible mechanisms of sexual dysfunction in gout, but may also form the basis of the development of interventions to address sexual dysfunction in gout.
A clinical implication of this study is that a patient-physician dialogue is necessary to assess whether or not gout is currently impacting their sexual life, and if so, better understand the effect. Considering the important contribution of sexuality to QOL [11], optimal gout management with treat-to-target strategy [36, 37] to reduce gout symptoms and flare rates can potentially reduce the impact of gout in sexual health and improve patient’s QOL. For people with refractory sexual dysfunction despite optimal gout management, referral to an expert in psychiatry or sexual health may benefit a sizeable proportion of gout patients and improve their QOL.
Considering that we invited a convenience sample of consecutive patients with gout (not people with diagnosed sexual health problems), the proportion of people reporting and discussing the impact of gout on relationships with spouse/significant other and sexual dysfunction was much higher than expected; with the exception of a few, almost everyone reported some impact. While sexual problems were a hallmark of gout flare associated severe pain, a majority of the nominal groups reported frequent sexual dysfunction due to chronic joint pain due to gout, most notably difficulty performing sexually due to gout-associated pain. The study findings demonstrate the physical impact of acute and chronic pain of gout and associated disability on intimacy and sexual function. Future studies that aim for a reduction of gout flares and chronic joint pain in gout should examine whether acute and chronic pain reduction can potentially have a positive impact on sexual activity and relationship with spouse as important patient-centered domain/outcome. Inclusion of sexual function as a secondary or exploratory outcome in clinical trials of gout will improve our understanding of the relationship of active gout symptoms and sexual dysfunction. They will also help us understand whether therapies with varying effects on inflammation and hyperuricemia differ in their ability to reduce gout’s impact on sexual function. Could a more optimal gout control (fewer gout flares, reduced joint pain) improve relationship and intimacy? Might management and optimization of associated depression have a positive impact? These hypotheses need to be tested in future studies.
Another important, novel study finding was the emotional impact of gout on intimacy. This was the 2nd top-ranked concern across all nominal groups based on the number of votes (17.4%) and two of the 14 nominal groups had this as their top concern. We are unaware of any other published studies of the emotional impact of gout on sexuality, intimacy and relationships, except our previous study where the focus was quality of life [7]. Associated depression, emotional stress, anger and frustration impact intimacy. Gout-related pain exposed patient’s vulnerabilities to their spouse that negatively affected their relationship. Patients identified several other causes of emotional impact of gout on intimacy, including the need to get help from spouse in maintaining personal hygiene. A feeling of inferiority due to the inability to be intimate also affected people with gout. Feeling of emotional fragility by both women and men with gout and of vulnerability due to “male ego” by men with gout were also reported. Patients also reported a reduced sexual desire due to gout, which might be related to associated depression and/or to concomitant metabolic syndrome associated conditions. Trust issues, disability and social life interference due to gout were of concern to the patients and ranked among the top five responses across all groups, as shown in the figure.
Some people lost relationship due to active, symptomatic gout (usually under-treated and sometimes undiagnosed/misdiagnosed) and some had difficulty getting into a relationship due to gout, demonstrating a significant effect of gout on people’s lives. To our knowledge, this has not been previously described. This finding indicates the severe, disruptive effect of inadequately controlled gout. Interestingly, one nominal group with gout under good control with few/no flares indicated that gout had not affected their relationship. Additionally, a few people in two nominal groups had not had a relationship since the diagnosis of gout, and therefore could not assess its effect on relationships; the choice of not being in a relationship was not related to gout (different from people described at the beginning of the paragraph). We also found that in rare instances, gout had no effect or a positive impact participant’s relationship. Participants attributed this positive experience to an understanding spouse, a strong relationship with spouse prior to the disease appearance, and infrequent gout flares.
Study findings must be interpreted with caution considering study limitations. Findings may not be generalizable to all Americans with gout, since this was a single center study of people previously evaluated for gout at a community-based clinic, and the nominal groups were conducted in English only. Due to the sensitive nature of the question, it is possible that people did not share the most intimate aspects of their relationships; some responses may have been missed. Assessment of possible solutions to the prioritized problems by the patients would have required another 1–1.5 h of nominal group discussions and were not assessed due to limited time. This is an important research agenda that needs to be addressed with future studies. Interpretation of findings by a single researcher is another study limitation. However, phrasing and nomination of responses, addition of details to the participant-nominated responses, the decision to group or ungroup responses, voting and ranking are all done by the nominal group participants, not the moderator. Therefore, it is unlikely that the number of researchers involved had any impact on the quantitative aspect of the NGT, which were the main study findings.
Study strengths were the inclusion of women and African-Americans, the achievement of data saturation, and the study cohort demographics being similar to other studies of gout populations.