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MEDICINE OF THE HIGHEST ORDER. Partnerships in Lupus Care: The New Horizon . Jennifer H. Anolik, MD, PhD Associate Professor of Medicine Division of Allergy, Immunology & Rheumatology University of Rochester Medical Center 2010. Patient-Centered Care. WHAT:
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MEDICINE OF THE HIGHEST ORDER Partnerships in Lupus Care: The New Horizon Jennifer H. Anolik, MD, PhD Associate Professor of Medicine Division of Allergy, Immunology & Rheumatology University of Rochester Medical Center 2010
Patient-Centered Care • WHAT: • Patient centered care is ‘respectful of and responsive to individual patient preferences, needs, and values, and ensuring that patient values guide all clinical decisions’ • Fosters interactions between clinicians, patients, and families • Aims to improve clinical practice by building caring relationships that bridge demographic, social, and economic differences between clinicians and patients • WHY: • Improved care • Improved well-being • Addressing disparities Epstein, Fiscella et al. Why The Nation Needs A Policy Push On Patient-Centered Health Care Health Affairs 2010
The Physician-Patient Disconnect • Doctor-assessed disease outcomes may not reflect patients’ perspectives on their health • Doctors place emphasis on laboratory parameters and traditional measures of disease activity • Patients tend to place more emphasis on their function. • The majority of patients with chronic diseases including lupus cite biopsychosocial factors as the biggest impacts on their health Friedman, Alarcon et al. 1999; Hale, Treharne et al. 2006; Ward, Lotstein et al. 1999)
Disease Activity Measures
Patient centered health outcomes • Lupus Specific Health Outcomes Measure • Lupus Quality of Life measure – 8 domains • LupusPRO- additional domains: Lupus Symptoms; Cognition; Lupus Medications; Procreation; Physical Function; Pain- Vitality; Emotional function; Body Image; Desires- Goals; Support system; Coping; Satisfaction with Lupus Care • Recent data demonstrating responsiveness to changes in patient health status Jolly, M., A. S. Pickard, et al. ‘Lupus-specific health outcome measure for US patients: the LupusQoL-US version.’ 2010 Ann Rheum Dis 69(1): 29-33.
Evidence for the benefits of patient-centered health care in lupus • Failure to access care has been linked to young age, low self-efficacy and lack of social support in lupus patients and worse health care outcomes • Patients can successfully learn to increase social support networks and self-efficacy strategies. Improved fatigue too!! • Patient-centered treatment and support plans (guided care models) impact outcomes in both lupus and other chronic disease Karlson, Daltroy et al. 1997; Karlson, Liang et al. 2004; Epstein, Fiscella et al. ; Aliotta, Grieve et al. 2008
Implementation in the Lupus Clinic • HYPOTHESIS: • The better lupus patients understand their disease, participate in their care, and have their concerns met, the more compliant they will be with medical follow-up and the better their overall health status and well-being will be. • IMPLEMENTATION: • 1) Lupus Nurse Care Coordinator • 2) Patient Mentor-Liason Program in collaboration with the Lupus Foundation of Genesee Valley Epstein, Fiscella et al. ; Pierce, Asick et al. 2009; Funnell 2010