Abstract
INTRODUCTION: Patient-reported outcome measures (PROMs) are used to capture patient perspectives in disease assessment. The objective of this study was to capture feedback about commonly used PROMs for spondyloarthritis (SpA) through semi-structured group discussions with individuals diagnosed with psoriatic arthritis (PsA) or ankylosing spondylitis (AS). The goal was to identify PROM content that most resonated with patient experiences and is therefore suitable for implementation in SpA clinical practice. METHODS: Semi-structured tasks and probes were designed to elicit qualitative patient feedback on several general health and disease-specific PROMs. During a series of in-person and telephone meetings, participants with PsA or AS were asked to identify content that resonated with them and to identify items that may not have captured their personal experiences living with their disease. Both individualized and small group review and concept elicitation were captured after participant review of PROMs. RESULTS: Both PsA and AS participants identified concepts that reflected their experiences living with a chronic disease, including fatigue, isolation, depression, inter-personal relationships, and sexual intimacy. Constructs incorporated into existing PROMs, such as pain, physical function, ability to perform activities of daily living, and stiffness, were also identified as important to participants. There were a few qualitative differences in participant perceptions about what they would like to see addressed by PROMs. For example, AS participants said that they would like to see PROMs elicit feedback about their experiences with pelvic and chest pain (e.g., as a result of chest inflammation/tenderness and chest expansion). PsA participants felt that PROMs should include measures about the embarrassment and shame that they experience as well as the impact of PsA on their daily lives. CONCLUSION: Results of these qualitative assessments suggest that PROMs should be incorporated more frequently in outpatient settings to help improve the quality of decision-making conversations between patients and their healthcare providers. Participants indicated that constructs such as isolation, depression, fatigue, and relationships with others were critical to inform healthcare professionals about the patient experience of living with their disease.