UNDERSTANDING LIMITATIONS OF PATIENT REPORTED CLINICAL OUTCOMES IN LUPUS

Author(s)

Caitlyn T. Wilke, BS, Research Assistant1, Meenakshi Jolly, MD, MS, Assistant Professor of Medicine2, Sonali Khandelwal, MD, Research Assistant3, Roger Rodby, MD, Assiociate Professor of Medicine2, Joel A Block, MD, Professor of Medicine3, A. Simon Pickard, PhD, Assistant Professor41University of Illinois at Chicago, Chicago, IL, USA; 2 Rush University Medical Center, Chicago, IL, USA; 3 Rush Medical University Medical Center, Chicago, IL, USA; 4 College of Pharmacy, University of Illinois at Chicago, Chicago, IL, USA

OBJECTIVES: Patient knowledge is associated with their ability to manage their disease (self-efficacy). The objective of this study was to examine the extent to which patients with systemic lupus erythematosus (SLE) reported specific organs/system involvement that was consistent with medical records. METHODS: In a cross-sectional study, patients with SLE were asked to indicate whether the following organ systems were affected by their lupus: skin/hair/scalp, joints, kidneys, brain, heart/lungs, (abnormal) blood counts, blood clots (including stroke). A retrospective chart review was undertaken to examine organ involvement and tests as recorded by their physician. Exact and kappa measures of agreement between physician and patient report were calculated for each organ system. RESULTS: The patient sample (n=70) had a mean (SD) age of 43.0 (13.4) and was 95.7% female. Exact agreement between organ involvement ranged from 47.8% for blood counts to 86.6% for blood clots. There was significant agreement for involvement of skin/hair/scalp (?=0.46), kidneys (?=0.55), brain (?=.54), and blood clots (?=0.60). Poor agreement was noted for abnormal blood counts (?=0.08) and joint involvement (?=0.06). CONCLUSION: Similar to studies of patient-physician agreement on quality of life, stronger agreement between patient and physician assessment was reported for more physical manifestations of disease. Results suggest there is opportunity to improve patient management through education and patient-provider communication.

Conference/Value in Health Info

2007-05, ISPOR 2007, Arlington, VA, USA

Value in Health, Vol. 10, No.3 (May/June 2007)

Code

PND20

Topic

Organizational Practices

Topic Subcategory

Academic & Educational

Disease

Systemic Disorders/Conditions

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