Disease-specific patient reported outcome tools for systemic lupus erythematosus
| Autor: | Mark Kosinsky, Roger A. Rodby, CT Wilke, Louis Fogg, Thomas F. Cash, Perry M. Nicassio, Mariko L. Ishimori, Iona Moldovan, Meenakshi Jolly, A. Simon Pickard, Rachel A. Mikolaitis, Rajan B. Kumar, Tammy O. Utset, Michael H. Weisman, Winston Sequeira, Joan T. Merrill, Daniel J. Wallace, E Katsaros, Joel A. Block |
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| Rok vydání: | 2011 |
| Předmět: |
Male
Coping (psychology) medicine.medical_specialty Activities of daily living Health Status Population Pain Feedback Social support Rheumatology Health care Activities of Daily Living Outcome Assessment Health Care Medicine Humans Lupus Erythematosus Systemic Psychiatry education education.field_of_study Lupus erythematosus Systemic lupus erythematosus business.industry Reproducibility of Results medicine.disease United States Anesthesiology and Pain Medicine Treatment Outcome Quality of Life Patient-reported outcome Female Self Report business Clinical psychology |
| Zdroj: | Seminars in arthritis and rheumatism. 42(1) |
| ISSN: | 1532-866X |
| Popis: | Purpose Systemic lupus erythematosus (SLE) can significantly affect both health and non-health-related quality of life (HRQOL and non-HRQOL). However, of the existent published patient-reported outcome (PRO) tools, none were developed from US patients, an ethnically diverse population. Furthermore, these tools do not address men with SLE or assess non-HRQOL issues. Herein, we present the development and validation of the Lupus Patient-Reported Outcome tool (LupusPRO) and discuss its clinical utility and research value compared with other PRO tools currently available for SLE. Methods Beginning with a conceptual framework, items for LupusPRO were generated using feedback from women and men with SLE. The tool underwent iterations based on patient feedback and clinimetric and psychometric analyses. Validity (content, construct, and criterion) and reliability (internal consistency and test-retest) for the 44-item LupusPRO tool are presented. Results Consistent with the conceptual framework, items were identified that were related to HRQOL and non-HRQOL constructs. HRQOL domains included (1) lupus symptoms; (2) physical health (physical function, role physical); (3) pain–vitality; (4) emotional health (emotional function and role emotional); (5) body image; (6) cognition; (7) procreation; and (8) lupus medications. Non-HRQOL domains were (1) available social support and coping; (2) desires–goals; and (3) satisfaction with medical care. Internal consistency reliability (0.68-0.94), test-retest reliability (0.55-0.92), content, construct ( r > 0.50 with SF-36), and criterion ( r > −0.35 with disease activity) validity were fair to good. Conclusions LupusPRO is a valid and reliable disease-targeted patient-reported health outcome tool that is generalizable to SLE patients in the United States of varied ethnic backgrounds and either gender. |
| Databáze: | OpenAIRE |
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