OBJECTIVES: Chronic refractory gout (CRG), also known as uncontrolled or refractory gout, is a debilitating inflammatory rheumatic condition. Patients experience severely painful and unexpected disease flares which, over the longer term, are associated with joint damage and chronic pain. The objective of this study was to gain an in-depth understanding of the impact that CRG has on patient health-related quality of life (HRQoL).

METHODS: A conceptual model of the impact of CRG on patient HRQoL was derived from a targeted literature review of CRG signs and symptoms covering the 10-years prior to August 2021. Twenty patients with CRG then participated in qualitative concept elicitation interviews; the results from these interviews were used to refine the conceptual model. Interviews included open-ended questions around frequency, duration, and severity for each identified concept, and bothersome impacts were scored on a scale of 0–10.

RESULTS: Most patients (60%) reported having >3 severe gout flares and many had 1–3 tophi (45%) within the past 6-months. The most frequently reported signs and symptoms included bodily pain, joint swelling, and tenderness (90%). Others included joint pain (80%), joint stiffness (70%) and tophi (70%). Joint pain was rated as the most bothersome symptom (mean = 9.1). The most frequently reported impacts were difficulty climbing one or several flights of stairs (100%), completing chores, running errands and shopping, climbing five steps, putting on shoes, walking outdoors on flat ground, and emotional impacts (all 95%). Impacts reported varied depending on the location of the affected joint. The most bothersome impact reported was walking outdoors (mean = 9.6).

CONCLUSIONS: Symptoms and associated impacts of refractory gout on HRQoL are multi-faceted, revealing a highly bothersome burden of disease that affects most aspects of a patient’s life.