Study participant characteristics
Fourteen nominal groups with 44 patients with gout were conducted, and saturation of themes was achieved. The mean age was 61.7 years (standard deviation [SD], 12.2; range, 40 to 83 years), 50% were men, 68% were African-American, 43% were retired and 48% were currently married (Table 1). Seven groups consisted of men only and six consisted of women only; one group had men and women. The mean duration of gout was 11.8 years (SD, 11.8) (Table 1). Seventy-nine percent of participants were using allopurinol (with/without colchicine, NSAIDs or prednisone), 15% were using febuxostat, and 5% were using only pain medications.
Themes from the NGT
Various responses from participants mapped to 7 key concepts as described below. The top themes/responses from each group are listed in Table 2 with their ranking, with themes and subthemes in Table 3 with few representative quotes. Additional details of participant votes/ranking and concerns are provided in Fig. 1 (Fig. 1 shows top responses across all nominal groups by the total number score/vote for each concern, as a proportion of all votes) and Additional file 1 (Additional file 1 provides study participant nominated responses, the concept they map to along with patient quotes). The top 5 responses accounted for 75% of all votes and included physical or emotional impact on intimacy, disability, trust issues/understanding and social life interference (Fig. 1).
Physical or emotional impact on intimacy
Physical impact on intimacy: 11 of the 14 nominal groups ranked this among the top 5 responses, and eight nominal groups ranked it as the top concern. Patient-nominated responses, and the themes and subthemes they mapped to, are shown in Table 3, with illustrative quotes. Gout led to a reduction in the frequency of sexual activity. Some people “lost relationships over gout” and others were unable to be in a relationship due to gout, since their partner did not understand the pain/suffering from gout and/or did not want to be in a relationship that required them to take this kind of responsibility.
Emotional impact on intimacy: Nine of the 14 nominal groups ranked this among the top 5 responses; it was the top ranked concern in two nominal groups. Patient-nominated responses, and the themes they mapped to, are shown in Table 3.
Disability/dependence interfering with social life and intimacy
Disability: Six of the 14 nominal groups ranked this among the top 5 responses; it was the top ranked concern in two nominal groups.
Physical dependence: Four of the 14 nominal groups ranked this among the top 5 responses.
Limitation of social life activities: Six of the 14 nominal groups ranked this among the top 5 responses.
Patient-nominated responses, and the themes and subthemes they mapped to, are shown in Table 3.
Trust issues/understanding by spouse or significant other
Four of the 14 nominal groups ranked this among the top 5 responses; it was the top ranked concern in two nominal groups. Patient-nominated responses, and the themes and subthemes they mapped to, are shown in Table 3. One of the four nominal group that ranked this concern high indicated that gout helped improve the understanding with their spouse, since it allowed them to talk about their pain to someone. The other three groups indicated that gout lead to less understanding and significant trust issues with their spouse.
Problem with self-image and perception by partner
Two of the 14 nominal groups ranked this among the top 5 responses. People with gout had issues with perception of self, and they felt older than their age, due to limitations related to gout, “Gout sometimes makes me feel like an old man in the relationship”.
Restricted diet/food choices negatively impacting the relationship
Four of the 14 nominal groups ranked this among the top 5 responses. People watched what they ate and where they went for dinner, in order to avoid foods that flared up their gout. Spouses had to play an active role in helping people avoid the foods that triggered gout attacks, and also change their own diets, not by choice. Participants indicated that restricted food choices for the couple negatively influenced their relationship with spouse/significant other.
Treatment-related financial burden stressing relationship
Two of the 14 nominal groups ranked this among the top 5 responses. People spent money on the care of gout, on expensive medications and hospital stay costs, which made it difficult to take vacation with spouse. Gout led to difficulty with employment, which affected income, and put a financial strain on personal relationships.
Emotional impact- communication, personality changes, effect on self or spouse
Five of the 14 nominal groups ranked this among the top 5 responses. People perceived personality change due to severe pain of gout and that they were short-tempered and often snapped at their spouse. These often led to miscommunication and misunderstanding. Several people also reported that gout affected their spouse’s behavior in a negative way, making them worried, aggravated and sometimes blaming themselves. Gout led to a change in social role in several relationships, where husband had to learn to share household chores with the wife suffering from gout.
Not in a relationship currently/ no or positive effect on relationship
Three of the 14 nominal groups ranked this among the top 5 responses, of whom two nominal groups had people who had not been in a relationship since the diagnosis of gout, and therefore were unable to assess whether it would or would not have an effect on relationships. Gout was not the reason to not be in a relationship. In one nominal group, people noted that they had had a good control of gout (with medications and diet) with infrequent flare/s, and since their gout was infrequent, they had not had any impact of gout on their relationship at all.
Figure 2 shows the main themes/subthemes derived from patient-nominated responses, and their mapping to the generic conceptual framework proposed by Verschuren et al. .
Effect of gender on intimacy/sexual function responses
The number of nominal groups ranking the following overall top responses were similar between male and female nominal groups: (1) physical impact on intimacy, 4/7 male vs. 4/6 female; (2) emotional impact on intimacy, 1/7 male vs. 1/6 female; and (3) disability, 1/7 male vs. 1/6 female; and (4) trust issues/understanding, 1/7 male vs. 0/6 female.
Potentially more male than female nominal groups ranked the following among the top five responses, (1) emotional impact on communication and personality change, 4/7 male vs. 1/5 female and (2) restricted diet/food choices negatively impacting the relationship, 3/7 male and 1/6 female nominal groups.