Measuring What Matters: A Qualitative Study of the Relevance and Clinical Utility of PROMIS Surveys in Systemic Lupus Erythematosus.

OBJECTIVE: To evaluate the relevance and clinical utility of the Patient-Reported Outcomes Measurement Information System (PROMIS) surveys in patients with systemic lupus erythematosus (SLE). METHODS: Adults with SLE receiving routine outpatient care at a tertiary care academic medical center participated in a qualitative study. Patients completed PROMIS computerized adaptive tests (CATs) in 12 selected domains and rated the relevance of each domain to their experience with SLE. Focus groups and interviews were conducted to elucidate the relevance of the PROMIS surveys, identify additional domains of importance, and explore the utility of the surveys in clinical care. Focus group and interview transcripts were coded, and a thematic analysis was performed using an iterative inductive process. RESULTS: Twenty-eight women and 4 men participated in 4 focus groups and 4 interviews, respectively. Participants endorsed the relevance and comprehensiveness of the selected PROMIS domains in capturing the effect of SLE on their lives. They ranked fatigue, pain interference, sleep disturbance, physical function, and applied cognition abilities as the most salient health-related quality of life (HRQOL) domains. They suggested that the disease-agnostic PROMIS questions holistically captured their lived experience of SLE and its common comorbidities. Participants were enthusiastic about using PROMIS surveys in clinical care and described potential benefits in enabling disease monitoring and management, facilitating communication, and empowering patients. CONCLUSION: PROMIS includes the HRQOL domains that are of most importance to individuals with SLE. Patients suggest that these universal tools can holistically capture the impact of SLE and enhance routine clinical care.

Patient Perspectives on DMARD Safety Concerns in Rheumatology Trials: Results from Inflammatory Arthritis Patient Focus Groups and OMERACT Attendees Discussion.

OBJECTIVE: The Outcome Measures in Rheumatology (OMERACT) Safety Working Group is identifying core safety domains that matter most to patients with rheumatic disease. METHODS: International focus groups were held with 39 patients with inflammatory arthritis to identify disease-modifying antirheumatic drug (DMARD) experiences and concerns. Themes were identified by pragmatic thematic coding and discussed in small groups by meeting attendees. RESULTS: Patients view DMARD side effects as a continuum and consider the cumulative effect on day-to-day function. Disease and drug experiences, personal factors, and life circumstances influence tolerance of side effects and treatment persistence. CONCLUSION: Patients weigh overall adverse effects and benefits over time in relation to experiences and life circumstances.

How Can We Improve Disease Education in People with Gout?

PURPOSE OF REVIEW: Gout management is currently suboptimal despite excellent available therapy. Gout patient education has been shown to enhance medication adherence and self-management, but needs improvement. We explored the literature on gout patient education including gaps in gout patient knowledge; use of written materials; in-person individual and group sessions; education via nurses, pharmacists, or multi-disciplinary groups; and use of phone, web-based, mobile health app, and text messaging educational efforts. RECENT FINDINGS: Nurse-led interventions have shown significant improvement in reaching urate goals. Pharmacist-led programs have likewise succeeded, but to a lesser degree. A multi-disciplinary approach has shown feasibility. Needs-assessments, patient questionnaires, and psychosocial evaluations can enhance targeted education. An interactive and patient-centered approach can enhance gout educational interventions. Optimal programs will assess for and address educational needs related to knowledge gaps, health literacy, race, gender, socio-economic status, and level of social support.

Pilot study of a multidisciplinary gout patient education and monitoring program.

OBJECTIVE: Gout patient self-management knowledge and adherence to treatment regimens are poor. Our objective was to assess the feasibility and acceptability of a multidisciplinary team-based pilot program for the education and monitoring of gout patients. METHODS: Subjects completed a gout self-management knowledge exam, along with gout flare history and compliance questionnaires, at enrollment and at 6 and 12 months. Each exam was followed by a nursing educational intervention via a structured gout curriculum. Structured monthly follow-up calls from pharmacists emphasized adherence to management programs. Primary outcomes were subject and provider program evaluation questionnaires at 6 and 12 months, program retention rate and success in reaching patients via monthly calls. RESULTS: Overall, 40/45 subjects remained in the study at 12 months. At 12 months, on a scale of 1 (most) to 5 (least), ratings of 3 or better were given by 84.6% of subjects evaluating the usefulness of the overall program in understanding and managing their gout, 81.0% of subjects evaluating the helpfulness of the nursing education program, and 50.0% of subjects evaluating the helpfulness of the calls from the pharmacists. Knowledge exam questions that were most frequently answered incorrectly on repeat testing concerned bridge therapy, the possibility of being flare-free, and the genetic component of gout. CONCLUSIONS: Our multidisciplinary program of gout patient education and monitoring demonstrates feasibility and acceptability. We identified variability in patient preference for components of the program and persistent patient knowledge gaps.