Over the last 20 years, patient reported outcomes, or PROs, have been found to have a scientific foundation for rheumatology care as strong as laboratory tests and radiographs. Furthermore, brief patient questionnaires are quite feasible at each visit, without interfering with patient flow, and improve the quality of the encounter for both patient and doctor. In rheumatoid arthritis and other rheumatic diseases, patient self-report questionnaires provide the most significant predictive clinical markers for severe outcomes such as work disability and premature mortality.
Clinical outcomes and epidemiology of rheumatic diseases is a major research focus of the Division of Rheumatology. The division has extensive experience collecting patient reported outcomes using the Multidimensional Health Assessment Questionnaire, or MDHAQ. The Rush Rheumatic Diseases Patient Reported Outcomes Repository monitors the long-term outcomes of all rheumatology patients seen at Rush as part of their routine care.
Our work
Current projects focus on: 1) Early diagnosis and treatment for patients with inflammatory arthritis, with a special focus on minority groups, and 2) Use of RAPID3/MDHAQ, a composite index only including PROs, to guide treatment decisions in routine care, to identify patients in remission, and to screen for fibromyalgia and side effects of medications.
Early Arthritis Awareness Program
MDHAQ/RAPID3: A generic instrument to evaluate disease severity in rheumatic diseases
The EULAR Outcome Measures Library
Early Arthritis Awareness Program
Arthritis affects 23% of all adults in the United States (US), and is the leading cause of pain and work-related disability. Rheumatoid arthritis (RA) is a chronic and severe inflammatory disease, which causes pain, joint destruction with loss of function, poor quality of life, and decreased life expectancy. In industrialized countries it affects 0.5 to 1% of adults. Many studies document that treatment of RA within the first 4 months of symptoms can lead to nearly total control of inflammation, allowing patients to have a normal life. However, the interval from initial symptoms to treatment in most patients is longer than 4 months, and varies considerably according to ethnicity, being longer in Hispanics, who are younger and have more severe disease than others groups at presentation.
When managed by rheumatologists, RA patients are diagnosed earlier, receive intensive therapy more frequently, and consequently achieve better clinical outcomes. However, there is a lack of public awareness about the severity of RA, which may influence patient decision on when to seek medical care (patient delay). Further, the role of primary care physicians (PCPs) is critical for early referral to a rheumatologist, as most people with inflammatory arthritis first seek help from a PCP (referral delay).
The prolonged delay to treatment initiation is of particular concern in Hispanics since their livelihood and employability may be closely linked to their physical function. Hispanics are the largest minority group in the US (expected to increase to 28.6% by 2060), and little information is available on RA in Hispanics, since the majority of research only include White patients. Implementation of strategies to improve early access to care is a challenge, because of limited cultural sensitivity, health literacy, language barriers, and a shortage of bilingual health care providers.
We have ongoing work to develop a culturally and linguistically competent early detection program for Hispanic patients to reduce diagnosis and treatment delay. We have developed a self-administered inflammatory arthritis-screening questionnaire to identify patients with high risk for RA. We are working to validate this screening questionnaire during Latino Health and Education Events in the community and to identify barriers for appropriate health care access.
Other initiatives for early arthritis intervention include the identification of spondyloarthropathies (SpA) in patients with uveitis. This project is led by Dr. Ofelya Gevorgyan, our second year rheumatology fellow, in collaboration with the Ophthalmologist department. Acute Anterior Uveitis (AAU) presents a unique opportunity for identifying SpA patients earlier. This is an area where the collaboration between ophthalmology and rheumatology specialists aim to improve the management of patients with SpA.
MDHAQ/RAPID3: A generic instrument to evaluate disease severity in rheumatic diseases
MDHAQ includes a simple index, the routine assessment of patient index data (RAPID3), which has been used effectively in patients with rheumatoid arthritis. This questionnaire helps to standardize the patient history in a scientific format. RAPID3 only include patients reported outcomes (PROs) and is nowadays, the composite index more frequently used in routine care by rheumatologists in the US according to a recent study (Curtis JR, et al. J Rheumatol. 2018;45(1):40-4.). Our group has performed extensive research to validate MDHAQ/RAPID3, including the recent development of the minimal clinically important improvement in RA, and validation in other rheumatic diseases, including systemic lupus erythematosus, polymyalgia rheumatica, osteoarthritis, and spondyloarthritis.
"Treat to target" is a principle or approach that has been successful in treating certain diseases as hypertension, high cholesterol, and diabetes. In RA, the primary target is remission. The concept of remission (absence of inflammation and total control of disease symptoms) in RA has proven complex, in part as no single gold standard is applicable to all individuals. Current criteria for remission are hardly applicable to routine care because all contain formal joint count and laboratory data. Our group has developed remission criteria based on RAPID3, applicable to routine care in a well-characterized cohort of patients with early RA (ESPOIR cohort).
New indices on the MDHAQ beyond RAPID3, including a screening tool (FAST3) to recognize fibromyalgia a major basis for poor treatment response, and MDHAQ-MEMO, for early recognition of side effects of medications, which account for 5% of hospital admissions in the US are under development. The FAST3 screening tool for fibromyalgia project was led by Dr. Juan Schmukler, during his rheumatology fellowship, and has been presented as a plenary during the American College of Rheumatology Conference in November 2018.
Our work has important implications to facilitate disease evaluation in routine care. With a trend on the health system evaluation of using measures focusing on patients (patient centered care) and a need for reliable instruments to be implemented in electronic medical records, MDHAQ/RAPID3 represents the ideal candidate for measuring disease burden in rheumatic diseases.
Discordance between patients and their physicians: implications in routine care and long-term outcomes
Assessments of disease activity may differ between patients and their physicians resulting on discordance, which may occurs in many chronic illnesses. Discordance has been extensively studied in rheumatoid arthritis (RA) patients and is associated with a lower likelihood for remission, and in patients with psoriatic arthritis, is also associated with decreased work productivity, greater joint destruction, and functional impairment. Our group have performed a formal comparison of discordance between diagnoses in patients from routine care. We have identified that approximately 38% of patients show discordant evaluation with their physicians, with similar patterns in RA, osteoarthritis, and systemic lupus erythematosus. We have also found that patients with discordance are more likely to be older, female (gender discordance), of Hispanic ethnicity (disparity related discordance), and have lower formal education. In addition, pain is the most important driver of higher discordance, especially in rheumatoid arthritis and osteoarthritis. Our data highlight the importance of incorporating both patient and physician global assessments in the evaluation of the disease, as standardized quantitative data. Further consequences of discordance are being elucidated.
The EULAR Outcome Measures Library
Multiple instruments to assess the patient’s perception of disease activity and other critical domains are used in rheumatology to evaluate treatment response and guide clinical decisions. These instruments, known as patient-reported outcomes (PROs), allow incorporating the patient’s perspective. Despite PROs being increasingly recognized as important measures, there is great heterogeneity in their use. In order to overcome the difficulty in accessing validated PROs and the heterogeneity in its use, Castrejon co-lead an ongoing initiative to generate a repository of the main cross-culturally validated PROs in rheumatic diseases endorsed by the EULAR (the European League Against Rheumatism). A structured Outcome Measures Library (OML) including a comprehensive database of validated PROs is freely available online.
Funding
Pincus has been awarded with multiple grants during his career and is president of Health Report Services, Inc., which owns a copyright for a trademark MDHAQ/RAPID3. Royalties and license fee are received from for-profit pharmaceutical and electronic medical record companies for the use of MDHAQ/RAPID3, all of which are transferred to medical schools for further development of quantitative measurement in clinical rheumatology care.
Our team
- Theodore Pincus, MD, principal investigator
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Professor of Medicine
Education: Harvard Medical SchoolResearch areas: Pincus research accomplishments include immunochemical characterization of antibodies in experimental immune-complex nephritis, a radioimmunoassay for DNA antibodies as a clinical test for SLE outside research laboratories, recognition that mortality in RA patients is predicted more significantly by a physical function on a patient questionnaire and formal education level. Primary current activities involve further dissemination of quantitative measurement in routine care to improve treatment, documentation and outcomes for patients with rheumatic diseases, and further development of a biopsychosocial model to reduce socioeconomic disparities in health.