Systemic lupus erythematosus (SLE) patients often report reduced physical functioning.^1–5 In a recent pilot,⁶ we found that impairment was common across multiple domains of physical functioning, including physical performance, activities of daily living, falls, and community mobility, and similar to that seen in populations receiving geriatric care, regardless of age. The older SLE patient population is also rapidly expanding, due to increased life expectancy among SLE patients⁷ and a larger pool of individuals at risk of developing late-onset SLE,⁸ putting them at risk for functional impairment due to both SLE and older age. Importantly, our pilot study also revealed that Black vs. white SLE patients participating in our pilot had slower gait speed, decreased lower-body strength, more trouble with activities of daily living, and more reported falls in the prior year.⁶

Functional status has been called the “sixth vital sign” and is a strong predictor of patient outcomes, but the majority of medical records lack documentation of functional status and demonstrate poor sensitivity for detecting impairment.⁹ Unrecognized functional impairment in SLE may lead to care that is not responsive to patients’ needs,^10,11 which may lead to poor treatment adherence and patient-physician interactions and adverse outcomes, including limited ability to participate in work and daily activities¹² and to live independently. Knowledge of functional status has the potential to identify individuals for whom resources are most needed, determine targets for intervention, and improve patient satisfaction with treatment.¹⁰ Despite this, patient-provider discussions about functioning are often outside the scope of usual care for SLE, and tools to facilitate such discussions are lacking. For Black populations with SLE, who disproportionately suffer poor outcomes generally,¹³ these gaps in care may be even more critical to address to prevent poor outcomes related to functioning, including loss of independence.

Leveraging our pilot study⁶ and other work in which we developed an app-based, patient-friendly report that provides information on functioning across these domains,¹⁴ we produced and delivered individualized reports to a predominantly Black group of SLE patients and simultaneously administered an online survey to gather feedback on the individualized report. Our aim was to describe potential comprehension, utility, and acceptability of the individualized functioning report in a predominantly Black and female SLE population.

In this exploration of an individualized physical functioning report for individuals with SLE, we found that the comprehension, utility, and acceptability of the reports by the participants receiving them were high. Most participants reporting the sections of the report to be easy to understand (with about three-quarters reporting “very easy”), although we found that some groups (particularly participants who were Black, female, or who had lower fluid cognition scores) were less likely to report ease of understanding across sections of the report; however, no differences were statistically significant. About two-thirds to three-quarters of participants reported that the various sections of the report were useful for care planning, although younger participants and participants with higher cognitive functioning were less likely to indicate the report’s usefulness for these tasks. Nearly all participants found the report to be acceptable, as measured by reported comfort in discussing the report with their providers and willingness to have functioning assessed frequently and in real-time.

While our results suggest that the report is easy to understand overall, there are several issues to consider in the comprehension of the report. It is possible that participants overestimate their comprehension of the report or do not wish to admit where they fail to understand the report; further, these phenomena may differ by participant characteristics and partially explain some of the patterns of comprehension we reported. These patterns also suggest that some groups (Black and female patients and those with lower cognitive functioning) may benefit more from targeted education along with the delivery of the report, together with changes to increase ease of comprehension for all users of the report. Some participants did note that numeric elements of the report (such as numbers, scales, and charts) were more difficult to understand than the wording and color gradations (“red=bad, green=good”). This is consistent with the qualitative feedback on a hypothetical cognitive functioning report that we recently gathered in this population.²⁵ It may also reflect issues with low health numeracy, which may be more prevalent than low health literacy in SLE.²⁶ Furthermore, this information provides additional targets for improvement of the report and for individualized education with respect to the delivery of a functioning report. It is important to note, however, that, although participants indicated remembering assessments that were reflected on their individualized reports >80% of the time, at least 2.5 years had passed since their assessment. This report is ultimately designed to be delivered in real time and in a setting with a care provider, who could also be trained and provide education and feedback to the participant, both of which could help increase comprehension.

Overall, most, but not all, participants found the various report sections to be useful for care planning, suggesting the individualized report has utility. While participants were not asked about specific aspects of care planning in the survey, examples of what might be discussed include: starting stopping medications , or tapering medications (including over-the-counter medications); designing an individualized exercise plan that takes SLE activity and burden into account; and scheduling preventive care and needed referrals and follow-up visits. Participants who were younger and had higher cognitive functioning were less likely to find the report useful, which may reflect a lack of understanding that functioning is a result of multiple factors including, but not limited to, age, regardless of the measures being traditionally “geriatric.” Additionally, patients who found the report less useful may be less likely to consider functioning as part of overall health or critical to their medical and self-care planning. In fact, while 49–64% thought the report could improve communication between patient and provider, fewer thought the report could help them set care goals (30–43%) or obtain needed health referrals and services (19–28%).

The individualized report had high acceptability for use in the clinical setting, in that the vast majority of participants were comfortable with discussing the report with care providers, with no substantial differences in this comfort by participant characteristics. Among the specific providers with whom the participants would feel comfortable discussing the report, rheumatologists were most frequently identified, suggesting that may patients would like rheumatologists to be aware of their functioning by these various measures as part of their overall health. Importantly, participants infrequently noted they would be comfortable discussing the report with some providers who could use functioning information to help improve patients’ day-to-day functioning, such as occupational therapists²⁷; this may highlight a gap in SLE patient understanding of the potential resources available to maximize function and improve quality of life.

This survey suggests potentially high comprehension, utility, and acceptability of the report among SLE patients, but the perspectives of SLE providers, which were not collected in this pilot study, are important for the use of this report in future pragmatic studies and/or in the clinic. While comprehension of the measures is likely to be higher amongst care providers, certain numeric aspects of the report will likely be novel and require some training to increase provider comfort with explaining the report to patients; it is also possible that the report will be less well-accepted by providers than by patients, or that some or all aspects of the report will not be considered useful or intervenable enough to overcome the limitations (primarily, lack of time), as reported in our dialysis study.¹⁴ In our recent qualitative study of a hypothetical cognitive report, providers noted that functioning reports may be difficult to address for sole SLE providers without the resources available at a large practice or academic setting.²⁸ Future studies to assess the effectiveness of the report should include provider feedback and consider providing mechanisms of multidisciplinary team support. Reports that include additional important measures of disability (such as the Stanford Health Assessment Questionnaire Disability Index²⁹) and health-related quality of life (Functional Assessment of Chronic Illness Therapy³⁰) could also be explored.

This study has other limitations beyond those noted above. The sample size is small and from a single region, which limits generalizability. Importantly, the associated lack of power also limits our ability to uncover patterns by important participant characteristics such as race and gender and to explore patterns across multiple response levels (vs. dichotomized responses), both of which could help further guide implementation. Participants’ reports reflected functioning from the pilot study, which may not reflect participants’ current functioning; it is possible that gaps between prior and current functioning affected how participants reported comprehension, utility, and acceptability. Although images and colors were used in the report in addition to words, it is important to note that other cohorts who are less educated or less likely to speak English as a primary language may have reported more difficulty with comprehension. While free-text responses revealed some additional information about barriers to report utility, it is possible that participants have other barriers to using the report, such as the perceived costs of potential provider suggestions, referrals, or services. The repetitive nature of the questions across the sections of the report may have resulted in similar intra-individual answers, although there was variation across sections, suggesting participants did consider sections individually. Finally, while our report covers multiple domains of functioning, it is not a complete picture of functioning, which would also include cognitive functioning. However, we are only in the early phases of developing such a report^25,28 and have not yet enabled the generation of reports directly from the cognitive data.

Despite these limitations, our results suggest that our individualized functioning report is easy to understand, useful, and acceptable to a majority Black and female group of SLE patients. The exploratory data reported here on this novel resource can support future studies that further explore patient and provider assessment of functioning reports; develop and provide targeted, relevant educational materials for both patients and providers; improve upon report presentation and delivery; and determine whether the delivery of a similar report can help improve patient-provider communication, facilitate shared decision-making, and, ultimately, improve patient-centered outcomes in SLE.