The experience and impact of living with gout: a study of men with chronic gout using a qualitative grounded theory approach

Abstract

Background: Gout is commonly undertreated and can lead to significant disability. Few data are available about the lived experience of gout or the barriers to effective urate-lowering therapy in men with gout.

Aims: This study aims to understand the experience of men living with chronic gout using a qualitative grounded theory approach.

Methods: Eleven English-speaking men with chronic gout participated in an in-depth semistructured interview about their experiences of living with gout. Interviews were recorded and transcribed. Consensus groups were used to analyze and validate the themes arising from the transcripts.

Results: Three major themes related to the experience of gout emerged from the interviews: the impact of disease (pain, dependency on family members during flares, isolation, work disability), the progressiveness of untreated gout (increasing number of affected joints and frequency of flares, increase in food type triggers, escalating treatment required to control flares due to reducing efficacy of anti-inflammatory medication), and the lack of knowledge of gout (a community wide lack of understanding of the causes or prevention of gout, stoicism/tolerance to symptoms and disability, personal and social stigma related to gout).

Discussion: Chronic gout has an important impact on both the patient and his family. This work provides previously hidden perspectives of the experience of gout, which may be generalized to other men with gout, suggesting that shame, embarrassment, and stigma lead to trivialization of the impact of disease despite its severity. These experiences may lead to undertreatment of gout because of lack of disclosure of symptom severity and lack of expectation of treatment effectiveness, which in turn could contribute to the development of progressive gout.