What Outcomes are Important for Gout Patients? In-Depth Qualitative Research into the Gout Patient Experience to Determine Optimal Endpoints for Evaluating Therapeutic Interventions

• DOI: 10.1007/s40271-016-0184-x
• Publication Date: 2016-07-06T10:22:03Z
• Authors: Sophi Tatlock; Katja Rüdell; Charlotte Panter; Rob Arbuckle; Leslie R. Harrold; William J. Taylor; Tara Symonds
• Keywords: Thematic Analysis; Patient Experience

Characterized by sudden onset of severe joint pain, swelling, redness, and tenderness to touch, gout 'flare ups' have a substantial impact on quality life (QoL). This research employed patient-centered approach explore the symptoms impacts gout, assess content validity existing patient-reported outcomes (PROs). Qualitative interviews were conducted with 30 US patients (non-tophaceous: n = 20, tophaceous: 10) five expert rheumatologists. Each interview included both concept elicitation (CE) questioning learn about patient experience cognitive debriefing three PRO instruments (HAQ-DI, GAQ, TIQ-20). Nine provided further real-time qualitative data through smart phone application. All subject thematic analysis using Atlas.ti. Two advisors clinicians engaged as at key stages throughout research. Interview identified same core proximal concepts. Severe pain (typically in joints extremities) was described cardinal symptom, often accompanied heat, sensitivity stiffness. Domains QoL impacted physical functioning, sleep, daily activities, work. The generally well-understood patients, but each items questionable relevance least some sample, dependent specific affected. Gout affected joints, resulting limitations functioning. Both HAQ-DI TIQ-20 are useful for purposes population, although modifications recommended.