Clifton O Bingham1, Alessandra L Butanis1, Ana Maria Orbai1, Michelle Jones1, Victoria Ruffing1, Anne Lyddiatt2, Mary Suzanne Schrandt3, Vivian P Bykerk4, Karon F Cook5, Susan J Bartlett1,6,7. 1. Division of Rheumatology, Department of Medicine, Johns Hopkins University School of Medicine, 5200 Eastern Avenue, MFL Center Tower 4100, Baltimore MD 21224, USA. 2. Anne Lyddiatt, Patient Partners in Arthritis, 28 Greenwood Rd, Ingersoll, ON, CAN N5C 3N1. 3. Suzanne Schrandt, Founder & CEO, ExPPect, Senior Patient Engagement Advisor, Society to Improve Diagnosis in Medicine, 3030 Wilson Bd. Ste E501, Arlington VA, 22201, USA. 4. Hospital for Special Surgery, 525 East 71st Street, 7th Floor, New York, NY 10021, USA. 5. Department of Medical Social Sciences, Northwestern University Feinberg School of Medicine, 625 N. Michigan Ave., Suite 2700, Chicago, IL. 60611, USA. 6. Divisions of Clinical Epidemiology and Rheumatology, Department of Medicine, McGill University, CORE Offices, 5252 de Maisonneuve #3D.57, Montreal, QC CAN. 7. RI-MUHC Centre for Outcomes Research and Evaluation and MUHC Center for Outcomes Research, 5252 de Maisonneuve #3D.57, Montreal, QC CAN.
Abstract
OBJECTIVES: Using patient-reported outcomes (PROs) to inform clinical decision-making depends on knowing how to interpret scores. Patient-Reported Outcome Measurement Information System® (PROMIS®) instruments are increasingly used in rheumatology research and care, but there is little available to guide interpretation of scores. We sought to identify thresholds and meaningful change for PROMIS Pain Interference and Fatigue scores from the perspective of rheumatoid arthritis (RA) patients and clinicians. METHODS: We developed patient vignettes using the PROMIS item banks representing a continuum of Pain Interference and Fatigue levels. During a series of face-to-face "bookmarking" sessions, patients and clinicians identified thresholds for mild, moderate, and severe levels of symptoms and identified change deemed meaningful for making treatment decisions. RESULTS: In general, patients selected higher cut points to demarcate thresholds than clinicians. Patients and clinicians generally identified changes of 5-10 points as representing meaningful change. The thresholds and meaningful change scores of patients were grounded in their lived experiences having RA, approach to self-management, and the impacts on function, roles, and social participation. CONCLUSION: Results offer new information about how both patients and clinicians view RA symptoms and functional impacts. Results suggest that patients and providers may use different strategies to define and interpret RA symptoms, and select different thresholds when describing symptoms as mild, moderate or severe. The magnitude of symptom change selected by patients and clinicians as being clinically meaningful in interpreting treatment efficacy and loss of response may be greater than levels determined by external anchor and statistical methods.
OBJECTIVES: Using patient-reported outcomes (PROs) to inform clinical decision-making depends on knowing how to interpret scores. Patient-Reported Outcome Measurement Information System® (PROMIS®) instruments are increasingly used in rheumatology research and care, but there is little available to guide interpretation of scores. We sought to identify thresholds and meaningful change for PROMIS Pain Interference and Fatigue scores from the perspective of rheumatoid arthritis (RA) patients and clinicians. METHODS: We developed patient vignettes using the PROMIS item banks representing a continuum of Pain Interference and Fatigue levels. During a series of face-to-face "bookmarking" sessions, patients and clinicians identified thresholds for mild, moderate, and severe levels of symptoms and identified change deemed meaningful for making treatment decisions. RESULTS: In general, patients selected higher cut points to demarcate thresholds than clinicians. Patients and clinicians generally identified changes of 5-10 points as representing meaningful change. The thresholds and meaningful change scores of patients were grounded in their lived experiences having RA, approach to self-management, and the impacts on function, roles, and social participation. CONCLUSION: Results offer new information about how both patients and clinicians view RA symptoms and functional impacts. Results suggest that patients and providers may use different strategies to define and interpret RA symptoms, and select different thresholds when describing symptoms as mild, moderate or severe. The magnitude of symptom change selected by patients and clinicians as being clinically meaningful in interpreting treatment efficacy and loss of response may be greater than levels determined by external anchor and statistical methods.
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