Patient Comprehension of a Multidomain Physical Functioning Report for Systemic Lupus Erythematosus Open Access
Xu, Grace (Spring 2020)
Published
Abstract
BACKGROUND: Systemic lupus erythematosus (SLE) is a chronic inflammatory disease that may affect men and women of all ages. Lupus patients suffer from a reduced quality of life, including decreased physical functioning. The aim of the current study was to survey SLE patients regarding their comprehension of an individualized, patient-friendly report that provides information across multiple domains of physical functioning. Here, we assessed whether 1) patient-reported comprehension of the report differs by patient characteristics and whether 2) patient-reported comprehension is reflected by concordance between self-evaluated and actual functioning.
METHODS: Individualized reports (including pictorial representations of several domains of physical function: activities of daily living, falls, physical performance, patient-reported physical functioning, and community mobility) were delivered to 59 lupus patients with existing data on these measures. Of these, 47 (79.7%) completed an online survey about their individualized report. Ease of interpretation for each domain was dichotomized as very easy vs. not; differences by characteristics were assessed by Fisher’s exact test. Self-evaluated functioning for each domain was dichotomized as very well vs. not; actual functioning was dichotomized for each domain; concordance was assessed by percent agreement and kappa values.
RESULTS: Reported ease of interpretation ranged from 70.2% to 85.1% across the domains of physical function. Ease of interpretation was lower among those who were black, and female and who had lower cognitive scores; there was greater variation by age. No differences were statistically significant. Percent agreement between self-evaluated and actual functioning ranged from 63.8% to 76.6%. With the exception of falls (κ=0.7), kappa values indicated weak to no agreement across each section of the report.
CONCLUSION: In this pilot, a report that provides at-a-glance information on physical functioning for lupus patients was associated with high self-reported comprehension but low concordance between actual and self-evaluated functioning. Targeted, culturally appropriate efforts may be needed to increase equity in comprehension. Future studies can help determine how clinical encounters may be improved with a real-time functioning report.
Table of Contents
Background………… 1
Systemic Lupus Erythematosus.…………1
Preliminary Studies…………. 5
INstant Functional Outcomes Report for Meaningful Encounters in Dialysis (INFORMED)…………5
Georgians Organized Against Lupus (GOAL) cohort…………5
Approaches to Positive, Patient-Centered Experiences of Aging in Lupus (APPEAL) pilot study.…………6
Current Study.…………7
Aims.…………9
Hypotheses.…………9
Methods.…………10
Study Design and Population..…………10
Results.…………16
Characteristics of study cohort………… 16
Aim 1: Compare self-reported ease of interpretation by patient characteristics (age, race, sex, cognitive functioning)…………16
Aim 2: Assess concordance between self-evaluated and actual functioning.…………19
Summary of other feedback on report by domain of functioning.…………20
Overall review of report………… 21
Discussion.…………22
References.…………26
Figures and Tables..………… 29
Appendix.…………45
Feedback Survey: A Physical Functioning Report for Lupus Patients.…………45
Abbreviations.…………64
Funding.…………64
Ethics Approval and Consent to Participate.…………64
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