Background/Purpose: The measurement of patient reported outcomes is a priority for patient-centered high value care. This is particularly true in chronic systemic diseases such as SLE, which can have a significant ongoing impact on quality of life. PROMIS instruments are precise, reliable, and valid measures of physical, mental, and social health, but their relevance and potential value in the clinical care of SLE patients has not been explored. The aims of this study were to evaluate SLE patient perspectives on the relevance and potential utility of PROMIS computerized adaptive tests (CATs) and PROMIS10.

Methods: Adult outpatients meeting 1997 ACR SLE classification criteria were recruited from an SLE Center of Excellence. Subjects completed 12 PROMIS CATs, the PROMIS10, and participated in focus groups (women) or structured interviews (men). Focus groups and interviews explored the relevance of PROMIS domains, the potential value of PROMIS instruments in routine medical care, and identified missing domains. Transcripts were analyzed for recurring themes and concepts using grounded theory.

Results: Twenty eight women and 4 men with SLE participated in 4 focus groups and structured interviews (table 1). Participants reported that PROMIS instruments, especially CATs, reflected their experience with lupus, with women prioritizing domains of fatigue, pain interference, physical function, sleep disturbance, and cognitive abilities as most relevant, and men selecting fatigue, sleep disturbance, anxiety, pain interference, and pain behavior. Subjects identified body image, intimate relationships, pregnancy, and relationships with providers as important areas not addressed by PROMIS. Participants were enthusiastic about using PROMIS in their medical care, citing utility in validating their experience, tracking symptoms and disease progression, facilitating communication with providers, and guiding treatment plans. A recurring theme in the focus groups and interviews was the importance of doctors reviewing the survey results.

Conclusion: SLE patients endorse PROMIS instruments as relevant, valuable, and potentially useful in improving clinical care. These data identify domains of importance to SLE patients, including men’s greater emphasis on mental health, and areas where there is a need to develop PROMIS instruments. Further longitudinal studies are essential to explore how to most effectively integrate PROMIS measures in routine clinical care.

Table 1. Socio-Demographic Characteristics of Participants (n=32)

ACR Meeting Abstracts - https://acrabstracts.org/abstract/relevance-and-utility-of-patient-reported-outcomes-measurement-information-system-promis-instruments-in-sle-a-qualitative-study/