Utility of a Functioning Report for Lupus Patients and Their Providers
Abstract
Patients with systemic lupus erythematosus (SLE) have reported substantial impairment in physical and cognitive functioning.Despite its importance, specific tools to improve the recognition and facilitate the discussion of functioning are currently lacking in SLE. To address this gap, we leveraged resources from multiple recent studies to address two major objectives: (1) to assess, in a pilot sample of SLE patients, the utility of our physical functioning report in patient-provider encounters and (2) to determine whether and how cognitive assessment data should also be included in a functioning report for SLE patients. For objective 1, individualized reports (including pictorial representations of several domains of physical function: activities of daily living, falls, physical performance, perceived physical functioning, and community mobility) were delivered to 59 lupus patients with existing data on these measures. Of these, 47 (79.7 percent) completed an online survey about their individualized report. Reported ease of interpretation ranged from 70.2 percent to 85.1 percent across the domains of physical function. Most reported that physical functioning domains of the report were useful for treatment or other care planning (range, 70.2-80.5 percent). For objective 2, patients (2 groups) and providers (2 groups) not only provided specific feedback to improve the report (e.g., refined images and language, de-emphasis on quantitative results), but also provided more general thoughts on comfort with discussing cognitive function in a clinical setting. Our products include a functioning app to produce physical functioning reports for SLE patients and a cognitive functioning report that can be modified based on feedback received. Future studies can help determine how clinical encounters may be improved with real-time functioning reports in SLE and beyond.
Document Details
- Document Type
- Technical Report
- Publication Date
- Jan 01, 2020
- Accession Number
- AD1097376
Entities
People
- Laura C Plantinga
Organizations
- Emory University