Technology can help health care providers understand their patients' experience of illness in a way that was previously impossible. Experience in using health information technology (IT) to capture this information through PROs within rheumatology suggests that careful attention to human centered design, including detailed workflow planning, consideration of patient and physician burden, integration into the health IT ecosystem, and delivering information to the right person at the right time are all important. Technology applications must be tested in diverse health systems and populations to ensure they are simple to interpret, useful for clinical decision making and effective in impacting outcomes.

Inclusion of patient-reported outcomes is important in SLE clinical trials as they allow capture of the benefits of a proposed intervention in areas deemed pertinent by patients. We aimed to compare the measurement properties of health-related quality of life (HRQoL) measures used in adults with SLE and to evaluate their responsiveness to interventions in randomised controlled trials (RCTs). A systematic review was undertaken using full original papers in English identified from three databases: MEDLINE, EMBASE and PubMed. Studies describing the validation of HRQoL measures in English-speaking adult patients with SLE and SLE drug RCTs that used an HRQoL measure were retrieved. Twenty-five validation papers and 26 RCTs were included in the indepth review evaluating the measurement properties of 4 generic (Medical Outcomes Study Short-Form 36 (SF36), Patient Reported Outcomes Measurement Information System (PROMIS) item-bank, EuroQol-5D, and Functional Assessment of Chronic Illness Therapy-Fatigue) and 3 disease-specific (Lupus Quality of Life (LupusQoL), Lupus Patient Reported Outcomes, Lupus Impact Tracker (LIT)) instruments. All measures had good convergent and discriminant validity. PROMIS provided the strongest evidence for known-group validity and reliability among generic instruments; however, data on its responsiveness have not been published. Across measures, standardised response means were generally indicative of poor-moderate sensitivity to longitudinal change. In RCTs, clinically important improvements were reported in SF36 scores from baseline; however, between-arm differences were frequently non-significant and non-important. SF36, PROMIS, LupusQoL and LIT had the strongest evidence for acceptable measurement properties, but few measures aside from the SF36 have been incorporated into clinical trials. This review highlights the importance of incorporating a broader range of SLE-specific HRQoL measures in RCTs and warrants further research that focuses on longitudinal responsiveness of newer instruments.

Objective

Applying treat-to-target strategies in the care of patients with rheumatoid arthritis (RA) is critical for improving outcomes, yet electronic health records (EHRs) have few features to facilitate this goal. We undertook this study to evaluate the effect of 3 health information technology (health-IT) initiatives on the performance of RA disease activity measures and outcomes in an academic rheumatology clinic.

Methods

We implemented the 3 following initiatives designed to facilitate performance of the Clinical Disease Activity Index (CDAI): an EHR flowsheet to input scores, peer performance reports, and an EHR SmartForm including a CDAI calculator. We performed an interrupted time-series trial to assess effects on the proportion of RA visits with a documented CDAI. Mean CDAI scores before and after the last initiative were compared using t-tests. Additionally, we measured physician satisfaction with the initiatives.

Results

We included data from 995 patients with 8,040 encounters between 2012 and 2017. Over this period, electronic capture of CDAI scores increased from 0% to 64%. Performance remained stable after peer reporting and the SmartForm were introduced. We observed no meaningful changes in disease activity levels. However, physician satisfaction increased after SmartForm implementation.

Conclusion

Modifications to the EHR, provider culture, and clinical workflows effectively improved capture of RA disease activity scores and physician satisfaction, but parallel gains in disease activity levels were missing. This study illustrates how a series of health-IT initiatives can evolve to enable sustained changes in practice. However, capture of RA outcomes alone may not be sufficient to improve levels of disease activity without a comprehensive treat-to-target program.

Objective

Use of patient reported outcomes (PROs) in the routine care of rheumatoid arthritis (RA) has been shown to improve health outcomes, However, integration of PROs into the clinical visit is inconsistent. We aimed to develop a "dashboard" for RA patients to display relevant PRO measures for discussion during a routine RA clinical visit.

Methods

Patients (N = 45) and providers (N = 12) were recruited from rheumatology clinics at a university center and a safety net hospital. Using a human-centered design process involving patients, clinicians, designers, and health-IT experts, we performed interviews, clinic observations, and focus groups, which subsequently guided an iterative phase of prototype testing.

Results

RA patients and their providers shared the goals of assessing wellbeing and developing a personalized treatment plan. We found conflicting views of which data were most important for guiding decision-making and for answering the patient's overarching question of "Am I OK?"

Conclusion

The final dashboard simplified the display of PRO data and correlated it longitudinally to the patient's medication regimen. It also included laboratory values relevant for RA care.

Practice implications

By presenting data graphically, the dashboard may provide a platform for patients and providers to communicate around PROs and shared goals.

Objective

Most studies that have evaluated patient-reported outcomes, such as those utilizing the Patient-Reported Outcomes Measurement Information System (PROMIS) Physical Function Short Form 10a (PF10a) in rheumatoid arthritis (RA), have been performed in white and English-speaking populations. The aim of our study was to assess the measurement properties of the PF10a in a racially/ethnically diverse population with RA and to determine the effect of non-English language proficiency, insurance status, and race/ethnicity on the validity and responsiveness of the PF10a.

Methods

Data were abstracted from electronic health records for all RA patients seen in a university-based rheumatology clinic between 2013 and 2017. We evaluated the use of the PF10a, floor and ceiling effects, and construct validity across categories of language preference, insurance, and race/ethnicity. We used standardized response means and linear mixed-effects models to evaluate the responsiveness of the PF10a to longitudinal changes in the Clinical Disease Activity Index (CDAI) across population subgroups.

Results

We included 595 patients in a cross-sectional analysis of validity and 341 patients in longitudinal responsiveness analyses of the PF10a. The PF10a had acceptable floor and ceiling effects and was successfully implemented. We observed good construct validity and responsiveness to changes in CDAI among white subjects, English speakers, and privately insured patients. However, constructs evaluated by the PF10a were less correlated with clinical measures among Chinese speakers and Hispanic subjects, and less sensitive to clinical improvements among Medicaid patients and Spanish speakers.

Conclusion

While the PF10a has good measurement properties and is both practical and acceptable for implementation in routine clinical practice, we also found important differences across racial/ethnic groups and those with limited English proficiency that warrant further investigation.