Publications

BACKGROUND

Despite significant interest in the collection of patient-reported outcomes to make care more patient-centered, few studies have evaluated implementation efforts to collect patient-reported outcomes from diverse patient populations.

OBJECTIVE

We assessed the collection of patient-reported outcomes from rheumatoid arthritis patients in an academic rheumatology clinic, using a paper and an online form through the electronic health record patient portal.

METHODS

We identified patients seen between 2012-2016 with ≥2 face-to-face encounters with a rheumatology provider and International Classification of Diseases codes for RA, ≥30 days apart. In 2013, our clinic implemented a paper version of the Patient Reported Outcome Measurement Information System (PROMIS) physical function form that was administered to patients upon their check-in at the clinic. In 2015, an online version of the form became available by way of the electronic health record patient portal to patients with active portal accounts. We compared the proportion of visits with documented PROMIS scores across age, race and ethnicity, and language and examined trends over time using a control chart.

RESULTS

We included 1078 patients with rheumatoid arthritis with 7049 in-person encounters at the rheumatology clinic over 4 years, with an average of 168 visits per month. Of the included patients, 80.4% of patients (867/1078) were female and the mean age was 58 (SD 16) years. The overall PROMIS physical function score documentation increased from 60.4% (1081/1791) of visits in 2013 to 74.4% (905/1217) of visits in 2016. Online score documentation increased from 10.0% (148/1473) in 2015 to 19.3% (235/1217) in 2016. African American patients were least likely to have a PROMIS physical function score recorded (55/88, 62.5% compared to 792/990, 80.0% for other racial or ethnic groups; P<.001). Compared with white patients, both African American and Hispanic patients were less likely to have active online electronic health record portal accounts (44/88, 50% and 90/157, 57.3% respectively, compared to 437/521, 83.9% of white patients; P<.001) and, once activated, less likely to use the online survey (6/44, 13.6% and 16/90, 17.8% respectively, compared to 135/437, 30.9% of white patients; P=.02). There was no significant difference in the proportion of any PROMIS physical function forms recorded between non-English vs English preferred patients. No significant differences were found across age or gender.

CONCLUSIONS

PROMIS physical function form completion improved overall from 2012-2016 but lagged among racial and ethnic minorities and non-English preferred patients. Future studies should address issues of portal access, enrollment, satisfaction, and persistence and focus on developing PRO implementation strategies that accommodate the needs and preferences of diverse populations.

BACKGROUND

We aimed to determine whether obesity in women with systemic lupus erythematosus (SLE) independently associates with worse patient-reported outcomes (PROs).

METHODS

Data derive from a prospective study of adult women who carried a diagnosis of SLE verified by medical record review. Two established definitions for obesity were used: fat mass index (FMI) ≥ 13 kg/m and BMI ≥ 30 kg/m . Dependent variables included 4 validated PROs: disease activity via Systemic Lupus Activity Questionnaire (SLAQ), depressive symptoms via Center for Epidemiologic Studies Depression Scale (CES-D), pain via Short Form 36 Health Survey (SF-36) Pain Subscale, and fatigue via SF-36 Vitality Subscale. We used multivariable linear regression to evaluate the associations of obesity with PROs while controlling for potential confounders (age, race, education, income, smoking, disease duration, disease damage, and prednisone use).

RESULTS

The analysis included 148 participants; 32% were obese. In the multivariate regression model, obesity associated with worse scores on each PRO. Mean adjusted scores for SLAQ and CES-D comparing obese versus non-obese participants were 14.8 versus 11.1 (p=0.01) and 19.8 versus 13.1 (p<0.01), respectively. The obese group also reported worse mean adjusted scores for pain (38.7 vs. 44.2, p<0.01) and fatigue (39.6 vs. 45.2, p=0.01).

CONCLUSION

In a representative sample of women with SLE, obesity (by FMI and BMI) independently associated with worse patient reported outcomes, including disease activity, depressive symptoms, and symptoms of pain and fatigue. Obesity may represent a modifiable target for improving outcomes in this patient population. This article is protected by copyright. All rights reserved.