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A proposed 15 second checklist of 10 measures for all usual care rheumatology visits Theodore Pincus, MD Clinical Professor of Medicine New York University school of Medicine [email protected] 1 0% 0% 5 0% 3 0% 2 0% 1 1. Presence of rheumatoid factor 2. Poor functional status 3. Quantitative radiographic score 4. Presence of ACRA (anti-CCP) 5. Number of swollen joints 4 What is the most significant risk factor for mortality over 5-20 years in patients with RA? 5 2 What is the number of units in a Sharp/van der Heidje radiographic score? 5 0% 44 8 0% 22 4 0% 12 8 64 0% 0% 66 0 1. 64 2. 128 3. 224 4. 448 5. 660 3 Approximately what proportion of new patients with RA have an ESR greater than 28mm/Hr? 1. 50% 2. 60% 3. 70% 4. 80% 5. 90% 5 0% 90 % 0% 80 % 0% 70 % 0% 60 % 50 % 0% 4 Approximately what proportion of new patients with rheumatoid arthritis have anti-citrullinated peptide antibodies (ACPA or anti-CCP)? 1. 50% 2. 60% 3. 70% 4. 80% 5. 90% 5 0% 90 % 0% 80 % 0% 70 % 0% 60 % 50 % 0% 5 What is the primary reason that “revolutionary” new biological therapies for RA lead to only 60% ACR 20 responses? 5 n. .. ... of n De sig o et Da m ag c li jo in gia ya l Fib ro m d rg et e No nta 1. Non-targeted different cytokines causing inflammation 2. Fibromyalgia 3. Damage to joints 4. Design of clinical trails d. .. 25% 25% 25% 25% A proposed 15 second checklist of 10 measures for all usual care rheumatology visits Theodore Pincus, MD Clinical Professor of Medicine New York University school of Medicine [email protected] 7 A checklist is a type of informational job aid used to reduce failure by compensating for potential limits of human memory and attention. It helps to ensure consistency and completeness in carrying out a task. A basic example is the "to do list.” • An airline pilot (and now often a surgeon) must complete a standard checklist before using his/her skills to fly an airplane (or operate). Surgical Safety Checklist •Has the patient confirmed his/her identity, site, procedure, and consent? •Is the site marked? •Is the anaesthesia machine and medication check complete? •Is the pulse oximeter on the patient and functioning? •Does the patient have a known allergy? •Difficult airway or aspiration risk? •Risk of >500ml blood loss (7ml/kg in children)? •How many agree with these statements? •Rheumatologists help their patients as much as any specialist helps any group of patients •Rheumatology care is underappreciated by the general medical community, public, payers •A primary explanation may be that rheumatologists generally little data to document improvement quantitatively • Why shouldn’t a rheumatologist follow a “scientific” procedure similar to pilots and surgeons to use a quantitative checklist at each patient visit before using skills in clinical care? Question for Rheumatologists For patients with RA under your care (not including patients in clinical trials), how often do you perform formal tender and swollen joint counts? Never 13% 32% 1%–24% of visits 25%–49% of visits 50%–74% of visits 75%–99% of visits Always 11% 14% 16% 14% Pincus T, et al. Ann Rheum Dis. 2006;65:820-822. Clinical Decisions Survey All clinical encounters for diagnosis and management of different diseases include 5 sources of clinical information: Clinician-intensive (1) patient history (2) physical examination Clinician-non-intensive (3) vital signs (4) laboratory tests (5) ancillary data, e.g., imaging studies, endoscopies, etc. Clinical Decisions Survey • Please indicate your opinion of the importance of each of 5 sources to provide 020%, 21-40%, 41-60%, 61-80%, or 81-100% of information for diagnosis and management of 8 diseases: 1. hypertension 2. diabetes mellitus 3. rheumatoid arthritis 4. hypercholesterolemia 5. pulmonary fibrosis 6. ulcerative colitis 7. lymphoma 8. congestive heart failure Highest ranked source of clinical information 588 >50%: 20-50%: <20%: MDs: Element Cong Heart Failure Diabetes Melllitus Hypertension Hyperlipidemia Lymphoma Pulmonary Fib Vital Signs Patient History Physical Exam Lab tests Other studies McCollum, Durusu Tanriover, Akalžn , H Yazici, Pincus: EULAR 2010 Rheumat Arthritis UlcerativeC oli-tis •Most rheumatologists say that a patient history and doctor’s physical examination are more important than laboratory tests in clinical decisions. •However, the only quantitative data in the usual medical record are laboratory tests. •Therefore, only “gestalt” narrative “unscientific” MD opinions are available to try to recognize whether patients are better or worse over long periods. •Despite clinical advances, most rheumatology patient encounters are conducted very similarly to 40 years ago. Standard scientific measures in medical care Disease Hypertension Diabetes Standard Biomarker Biomarker Biomarker Measure Measure in Measure in clinical clinical trials care Blood Blood pressure pressure Glucose, Glucose, Hgb A1c Hgb A1c RheumaRF, ACR Core toid anti-CCP, Data Set, Arthritis ESR, CRP DAS28 Blood pressure Glucose, Hgb A1c Standard scientific measures in medical care Disease Standard Biomarker Biomarker Biomarker Measure Measure in Measure in clinical clinical trials care Hypertension Diabetes Blood pressure Glucose, Hgb A1c RF, anti-CCP, ESR, CRP Blood Blood pressure pressure Glucose, Glucose, Hgb A1c Hgb A1c RheumaRF, ACR Core toid anti-CCP, Data Set, Arthritis ESR, CRP DAS28 Why is a checklist needed for optimal assessment of patients with rheumatic diseases? • No single ‘Gold Standard’ measure, e.g., blood pressure, cholesterol, glucose, for diagnosis and management in all individual patients • Laboratory tests, the primary source of quantitative data in many diseases, are limited in rheumatic diseases • Indices of 3–7 measures, based on Core Data Set used in formal clinical research RA Core Data Set – 7 or 8 measures Source: MD exam Tender joint count √√ Swollen joint count √√ Assessor Global estimate √√ X- Lab Patient ray self-report √√ ESR or CRP Phys Function-HAQ,MDHAQ √√ Pain √√ Patient Global estimate √√ Radiographic score if >1 yr √√ Felson et al, Arthritis Rheum 36:729, 1993. van Riel, Br J Rheumatol 31:793, 1994. What should be included in a rheumatology visit checklist? Types of measures in care of patients with rheumatic diseases: •Laboratory tests •Joint counts •Radiographic scores •Patient questionnaire scores Laboratory tests for a rheumatology visit checklist? Textbook statements concerning ESR in RA "the erythrocyte sedimentation rate is increased in nearly all patients with active RA” Lipsky PE. Rheumatoid arthritis. In: Fauci AS, Langford CA, eds. Harrison's Medicine. New York: McGraw-Hill,2006:85. “at least 5% of patients with clinically active disease may have a normal ESR” Chatham WW, Blackburn WD, Jr. Laboratory findings in rheumatoid arthritis. In: Koopman WJ, Moreland LW, editors. Arthritis and allied conditions: a textbook of rheumatology. Philadelphia, PA: Lippincott, Williams & Wilkins, 2005:1207 Traditional approaches to clinical expertise: EMINENCE BASED MEDICINE - making the same mistakes with increasing confidence over an impressive number of years ELOQUENCE BASED MEDICINE - a year-round suntan and brilliant oratory may overcome absence of any supporting data ELEGANCE BASED MEDICINE - where the sartorial splendor of a silk-suited sycophant substitutes for substance The modern alternative? EVIDENCE BASED MEDICINE - the best approach to clinical data - requires information from clinical ESR Values in Patients With RA Wolfe F, Michaud K, J Rheumatol. 1994;21:1227–1237. Wichita KS, USA ESR ≥ 28 ESR < 28 mm/h mm/h Females 63% 37% Males 55% 45% Similar results have been reported from: Nashville, TN, USA Jyvaskyla, Finland Oslo, Norway Nancy, France Groningen, The Netherlands Belfast, Ireland ESR in 7 Locations 1994-2005 % ESR<28 mm/Hr 1994 1996 1996 1556 F37%,M45% 237 135 26 1996 283 28 Belfast, N Ireland2 1996 Jyvaskyla, Finland 3 2009 Nashville, TN, USA3 2009 51 28 30 30 Wichita, KS, USA1 Oslo, Norway2 Nancy, France2 Groningen, Netherlands2 Yr of report Mean Median ESR (mm/h) n Location 1892 738 37F, 34M 29 45% 47% 1- Wolfe and Michaud, J Rheumatol. 1994;21:1227–1237. 2- Smedstad, Kvein, et al. Br J Rheumatol 1996;35:746-751. 3- Sokka T, Kauitinen, Pincus. J Rheumatol. 2009;36(1):1387-1390. Meta-analysis: Anti-cyclic citrullinated peptide (CCP) antibody and rheumatoid factor (RF) Anti-CCP RF Number of studies 37 50 Positive likelihood ratio 12.5 4.9 Odds ratio for RA 16.1 – 39.0 1.2 – 8.7 Nishimura K et al. Annals of Internal Medicine 146:797-808, 2007 Meta-analysis: Anti-cyclic citrullinated peptide (CCP) antibody and rheumatoid factor (RF) Number of studies Positive likelihood ratio Anti-CCP RF 37 50 12.5 4.9 Odds ratio for RA 16.1 – 39.0 1.2 – 8.7 Sensitivity 67% 69% Specificity 95% 85% % of patients with negative test result 33% 31% Nishimura K et al. Annals of Internal Medicine 146:797-808, 2007 % of RA patients with abnormal measures at presentation: Evidence – not eminence – based • • • • • • ESR >28 mm/Hr CRP >10 Rheumatoid factor positive Anti-CCP positive Function score >2/10 Pain score >2/10 - 57% 58% 69% 67% 70% 89% Wolfe F, et al. J Rheumatol. 1994;21:1227-37. Sokka T, et al. J Rheumatol. 2009;36:1387-90. Nishimura K, et al. Ann Intern Med. 2007;146:797-808. Pincus T, Swearingen CJ. [Abstract #432] Arthritis Rheum 2009;60(Suppl):S160 Proposed Laboratory Biomarkers for Rheumatoid Arthritis Over 60 Years 1950s 1960s 1970s 1980s 1990s 2000s Rheumatoid factor Immune complexes HLA type, Prostaglandins Shared epitope Monoclonal Abs,Anti-CCP Genes, cytokine targets •Of course, the laboratory remains the primary source of further understanding of pathogenesis and advances in therapy. •Nonetheless, for clinical care, laboratory tests have substantial limitations, including normal values in 30-50% of individual patients with many diseases, and often do not change decisions about therapy. Formal quantitative joint count for a rheumatology visit checklist? A simplified twenty-eightjoint quantitative articular index in rheumatoid arthritis HA Fuchs, RH Brooks, LF Callahan, T Pincus Arthritis Rheum 32:531-537, 1989 Relative efficiencies of 7 ACR Core Data Set measures in 4 adalimumab clinical trials 3.00 2.72 2.65 2.50 2.14 2.12 2.00 1.86 1.48 1.50 1.10 1.00 1.00 2.06 1.55 1.60 1.42 1.52 1.48 1.36 1.30 1.12 1.00 0.92 0.94 1.00 1.66 1.00 1.43 1.27 1.17 0.60 0.50 0.22 0.00 ARMADA DE011 DE019 STAR Tender Joint Count Swollen Joint Count Assessor Global CRP Function (HAQ) Pain Patient Global Relative efficiencies of 7 Core Data Set measures and 3 Indices, DAS28, CDAI, and RAPID3, to distinguish patients treated with infliximab vs control therapies in ATTRACT and ASPIRE clinical trials Furer, Pincus, et al, EULAR 2009 Changes in measures in 100 RA patients – 1985-1990 over 5 years - effect size Type of measure: Joint count Radiographic Laboratory Clinical Tenderness Swelling Pain on motion Deformity Limited motion Joint space narrowing Erosions Malalignment Erythrocyte sedimentation rate Rheumatoid factor titer Hemoglobin Morning stiffness Grip strength Walk time Button time Functional status–MHAQ Global status Pain–visual analog scale Helplessness Better Worse Patient questionnaire –1.5 –1.3 – 1.1 – 0.9 – 0.7 – 0.5 – 0.3 – 0.1 0.1 MHAQ=modified Health Assessment Questionnaire. Callahan, Pincus et al. Arthritis Care Res Effect Size 0.3 0.5 Some Limitations of Formal Swollen and Tender Joint Countsto distinguish • Relative efficiencies active from control treatments in clinical trials are similar or lower than global and patient measures • May improve over 5 years while joint deformity and functional disability may progress Joint counts in RA • Of course, joint count is the most specific measure of RA status. • The most specific measure is not necessarily most informative. • Poorly reproducible by different observers - must be done by same observer – not GP, infusion, etc. • Rigorous formal joint count not performed at most visits A careful joint examination, rather than a formal joint count may be appropriate for a rheumatology visit. Radiographs and imaging studies for a rheumatology visit checklist? Radiographs in Diagnosis and Management of Patients With RA • Excellent quantitative scoring systems - Sharp, van der Heijde, Larsen, Genant • Erosions are closest to pathognomonic sign in RA • Reflect cumulative damage of disease Change from baseline (Mean +/- SE) TEMPO Trial: Year 2 Radiograph: Change in Total Sharp Score from 8 Baseline to Year 2 7 6 5 MTX = 206 E = 203 MTX+E = 213 3.34 (CI 1.18, 5.50) 4 3 2 1.10* (CI 0.13, 2.07) 1 0 -1 * p < 0.05, E vs MTX † p < 0.05, Combination vs MTX ‡ p < 0.05, Combination vs E -0.56†‡ (CI –1.05, -0.06) 450 400 350 300 250 200 150 100 50 1 1.59 -0.54 ERA ETA ERA MTX TEMPO Combi 0.52 2.8 0.4 3.7 1.3 3 5.7 IFX MTX PREMIER Combi PREMIER ADA PREMIER MTX 0 TEMPO ETA TEMPO MTX IFX Combi Yazıcı Y, Yazıcı H, Arthritis Rheum 2006;54(supl) Change in Total Sharp/van der Heijde radiographic scores (0-448) in TEMPO trial over 2 years Van der Heijde A&R2006 RA Cohort #2- Cox Proportional Hazards Model Analyses Including Demographic, Functional, SelfReport, Joint Count, X-ray, Laboratory and Disease Variables in 206 patients 1985-1990 Univariate RR P (95% CL) Value 1.07 <0.001 Age Stepwise Model RR P (95% CL) Value 1.06 <0.001 Comorbidity MHAQ ADL Score Disease duration Education ESR Joint count 1.63 2.00 1.04 0.89 1.01 1.02 <0.001 0.003 0.02 0.007 0.005 0.10 1.40 1.76 ----- Walking time X-ray 1.03 1.40 0.04 0.17 --- Callahan, Brooks, Pincus, Arthritis Care Res 10:381,1997 0.02 0.02 ------- Significance of 8 variables as predictors of mortality in 53 RA cohorts Significant in multivariate analyses 100% 6% 4% 22% 30% Significant in univariate analyses 34% 17% 32% 23% 21% 39% 32% 46% Not Significant 50% 39% 75% 50% 50% 28% 25% 72% 0% 65% Physical Cofunction morbidities (N=18) (N=23) 45% 44% 37% 31% Rheumatoid factor (N=29) Extraarticular disease (N=18) ESR (N=19) Socioeconomic status (N=13) 22% 11% Joint count (N=18) Hand radiograph (N=18) Sokka T, Abelson B, Pincus T. Clin Exp Rheumatol 26(suppl):S35-61, 2008 Associations of HLA-DR4 with rheumatoid factor and radiographic severity in rheumatoid arthritis. NJ Olsen, LF Callahan, RH Brooks, EP Nance, JJ Kaye, P Stastny, T Pincus Am J Med 84:257-264, 1988 Strongly and Weakly Related Measures to Assess RA Radiographs Functional disability ESR, CRP Pain Shared epitope Patient global Joint swelling Rheumatoid factor Joint tenderness Joint deformity Fatigue Duration of disease Age MRI Can Better Identify Early Bone Erosions than X-ray Methotrexate in RA Care: 1980-2005 Jyvaskyla, Finland & Nashville, TN Sokka and Pincus. Rheumatology (Oxford). 2008:47:1543-1547. T Pincus, TWJ Huizinga, Y Yazici J Rheumatol. 34:250-252, 2007 Some Problems With Radiographs in RA 1. Quantitative score tedious to perform 2. Treatment initiated prior to erosions – MRI, ultrasound more sensitive 3. Radiographic damage has poor prognostic value for work disability, death and even joint replacement 4. Treatment prior to erosions Patient self-report questionnaire scores for a rheumatology visit checklist? Patient self-report questionnaires in usual rheumatology care • Patient questionnaire provides quantitative patient history • Improvement in rheumatology care cannot be documented optimally without quantitative patient self-report data • Not having these data in most settings is a major stumbling block for rheumatology MultiDimensional Health Assessment Questionnai re (MDHAQ) Page 1 MDHAQ/RAPID3: 04 Nov 2003 3 RA Core Data Set scores FN (0–10) = 2.7 PN (0–10) = 9.5 PTGL (0–10) = 9.0 2.7 RAPID3 (0–30) = 21.2 9.5 Severity: 12.1-30 = High 6.1-12 = Moderate 3.1-6 = Low 0-3 = Near remission 9.0 21.2 Indices to assess patients with RA ACR 1 DAS28 2 CDAI 3 RAPID3 4 # Tender joints # Swollen joints MD global ESR or CRP Patient function Patient pain Patient global TOTAL √ √ √ √ √ √ √ 0.56 sq rt (TJC28) 0.28sq rt (SJC28) -0.70 ln (ESR) --0.014 PTGL 0-10 0-28 0-28 0-10 ---0-10 0-76 ----0-10 0-10 0-10 0-30 1. Felson DT, et al. Arthritis Rheum. 1993;36;729-49. 2. Prevoo MLL, et al. Arthritis Rheum 1995;38:44-8. 3. Aletaha D, Smolen J. Clin Exp Rheumatol 2005;23:S100-8. 4. Pincus T, et al. J Rheumatol. 2008;35: 2136-47. DAS = Disease Activity Score, CDAI = Clinical Disease Activity Index. Visit 1: 14 Nov 2003 Visit date 4Nov03 L-ESR 2.7 9.5 9.0 21.2 43 Prednisone N-3qd T-Methotrexate N10qw Q-Function (0–10) Q-Pain (0–10) Q-Global (0–10) RAPID3 (0–30) T-Folic acid N1qd T-Tylenol w/Codeine 30tid T-Naproxen 880q6h N=new medication, C=change in dose, T=taper, D/C=discontinue RAPID3 versus DAS28 and CDAI in 285 RA patients DAS28 CDAI Spearman correlation Spearman correlation rho = 0.657 rho = 0.738 Pincus T, et al. J Rheumatol. 2008; 35: 2136-2147. 150 Time to Score RA Measures Seconds 114 100 50 106 94 42 9.6 4.6 0 28 Joint HAQ-DI DAS28 Count CDAI RAPID3 RAPID3 (0-10) (0-30) Pincus, Swearingen, Bergman, Colglazier, Kaell, Kunath, Siegel, Yazici Arthritis Care Res. 2010; 62:181-189. HAQ-DI = Health Assessment Questionnaire-Disability Index MDHAQ/RAPID3: 04 Nov 2003 3 RA Core Data Set scores FN (0–10) = 2.7 PN (0–10) = 9.5 PTGL (0–10) = 9.0 2.7 RAPID3 (0–30) = 21.2 9.5 Severity: 12.1-30 = High 6.1-12 = Moderate 3.1-6 = Low 0-3 = Near remission 9.0 21.2 MDHAQ/RAPID3: 13 Jan 2004 3 RA Core Data Set scores FN (0–10) = 0 PN (0–10) = 0.5 PTGL (0–10) = 0.5 RAPID3 (0–30) = 1.0 0 0.5 0.5 1.0 Severity: 12.1-30 = High 6.1-12 = Moderate 3.1-6 = Low 0-3 = Near remission Visit 2: 13 Jan 2004 Visit date 4Nov03 13Jan04 Q-Function (0–10) 2.7 0 Q-Pain (0–10) 9.5 0.5 Q-Global (0–10) 9.0 0.5 RAPID3 (0–30) 21.2 1.0 Tender Joint Count (0-28) 14 2 Swollen Joint Count (0-28) 12 1 MD Global (0-10) 8.0 1.0 43.0 4.5 43 8 N3qd 3qd N10qw C20qw T-Folic acid N1qd 1qd T-Tylenol w/Codeine 30tid 30tid 880q6h 440bid CDAI (0-76) L-ESR T-Prednisone T-Methotrexate T-Naproxen T-Adalimumab N = new drug, C = change in dose, T = taper, D/C = discontinue Visit 4 - 28 Sep 2004 Visit Date 4Nov03 13Jan04 20Apr04 28Sep04 L-ESR 2.7 9.6 8.9 21.2 43 0 0.3 0.3 0.6 8 0.3 0.2 0.3 0.8 13 0 0.6 1.0 1.6 10 T-Prednisone N3qd 3qd 3qd 3qd N10qw C20qw 20qw 15qw T-Folic acid N1qd 1qd 1qd 1qd T-Tylenol w/Codeine 30tid 30tid D/C 880q6h 440bid 440bid Q-Function (0–10) Q-Pain (0–10) Q-Global (0–10) RAPID3 (0–30) T-Methotrexate T-Naproxen 440bid N = new drug, C = change in dose, T = taper, D/C = discontinue MDHAQ/RAPID3: 28 Dec 2004 3 RA Core Data Set scores FN (0–10) = 0 PN (0–10) = 6.0 PTGL (0–10) = 5.5 0 6.0 RAPID3 (0–30) = 11.5 5.5 11.5 Severity: 12.1-30 = High 6.1-12 = Moderate 3.1-6 = Low 0-3 = Near remission MDHAQ/RAPID3: 28 Dec 2004 3 RA Core Data Set scores FN (0–10) = 0 PN (0–10) = 6.0 PTGL (0–10) = 5.5 0 6.0 RAPID3 (0–30) = 11.5 5.5 11.5 Severity: 12.1-30 = High 6.1-12 = Moderate 3.1-6 = Low 0-3 = Near remission Visit 5: 28 Dec 2004 Visit date 4Nov03 13Jan04 20Apr04 28Sep04 28Dec04 Q-Function (0–10) 2.7 0 0.3 0 0 Q-Pain (0–10) 9.5 0.5 0.0 0.5 6.0 Q-Global (0–10) 9.0 0.5 0.5 1.0 5.5 RAPID3 (0–30) 21.2 1.0 0.8 1.5 11.5 Tender Joint Count (0-28) 14 2 0 0 10 Swollen Joint Count (0-28) 12 1 0 0 8 MD Global (0-10) 8.0 1.0 0.5 0.5 6.5 43.0 4.5 1.0 1.5 30.0 43 8 13 10 14 N3qd 3qd 3qd 3qd 3qd N10qw C20qw 20qw 15qw C25qw T-Folic acid N1qd 1qd 1qd 1qd 1qd T-Tylenol w/Codeine 30tid 30tid D/C 880q6h 440bid 440bid 440bid 440bid CDAI (0-76) L-ESR T-Prednisone T-Methotrexate T-Naproxen T-Adalimumab N=new drug, C=change in dose, T=taper, D/C=discontinue N40qow MDHAQ/RAPID3: 8 Feb 2005 3 RA Core Data Set scores FN (0–10) = 0 PN (0–10) = 0.0 PTGL (0–10) = 0.5 RAPID3 (0–30) = 0.5 0 0 0.5 0.5 Severity: 12.1-30 = High 6.1-12 = Moderate 3.1-6 = Low 0-3 = Near remission Visit 6: 8 Feb 2005 Visit date 4No03 13Ja04 20Ap04 28Se04 28De04 8Fe05 2.7 0 0.3 0 0 9.5 9.0 21.2 0.5 0.5 1.0 0.0 0.5 0.8 0.5 1.0 1.5 6.0 5.5 11.5 43 8 13 10 14 0 0.0 0.5 0.5 14 N3qd 3qd 3qd 3qd 3qd 3qd N10qw C20qw 20qw 15qw C25qw C15qw T-Folic acid N1qd 1qd 1qd 1qd 1qd 1qd T-Tylenol w/Codeine 30tid 30tid D/C 880q6h 440bid 440bid 440bid 440bid D/C N40qow 40qow Q-Function (0–10) Q-Pain (0–10) Q-Global (0–10) RAPID3 (0–30) L-ESR T-Prednisone T-Methotrexate T-Naproxen T-Adalimumab N=new drug, C=change in dose, T=taper, D/C=discontinue Cross-Sectional Data in Patients With RA – Cohort #2 in 1985 and Cohort #4 in 2000: Multidimensional Health Assessment Questionnaire (MDHAQ) scores 2000 2.0 2.0 1.5 1.5 MHAQ MHAQ 1985 1.0 1.0 0.5 0.5 0.0 0.0 0 5 10 15 Disease Duration (Years) 20 0 5 10 15 20 Disease Duration (Years) Pincus, Sokka, Kautiainen, Arthritis Rheum 52:1009, 2005 Cross-Sectional Data in Patients With RA – Cohort #2 in 1985 and Cohort #4 in 2000: Swollen Joint Count Scores 1985 2000 20 Swollen Joint Count 28 Swollen Joint Count 28 20 16 12 8 4 0 16 12 8 4 0 0 5 10 15 Disease Duration (Years) 20 0 5 10 15 20 Disease Duration (Years) Pincus, Sokka, Kautiainen, Arthritis Rheum 52:1009, 2005 25 RF+ 20 15 10 5 0 0 5 10 Disease duration 15 Larson score for hands, % of max Larson score for hands, % of max Patients – Cohort #2 in 1985 and Cohort #4 in 2000: Larsen X-Ray score,% of 1985 2000 Maximum 30 30 RF25 20 RF+ 15 10 5 RF- 0 0 5 10 15 Disease duration Pincus, Sokka, Kautiainen, Arthritis Rheum 52:1009, 2005 Median Levels of All Patients at Initiation of MTX 1996-2001 and Mean of 2.6 Years Later in: A. 63 “control” adequate responders continuing MTX B. 30 incomplete responders initiating biologic agent 63 Adequate Responders (“Controls”) ESR 30 Incomplete Responders Biologic Follow-up MTX Start (NO Biologic) MTX Start Start 24 16 28 18 MDHAQ-Function 2.3 1.0 3.2 3.3 Pain 4.1 1.4 5.2 6.8 Patient Global 4.2 0.9 5.5 5.5 RAPID3 10.6 3.6 14.9 16.2 Pincus T, Swearingen CJ. [Abstract #1627] Arthritis Rheum 2009;60(Suppl):S608. Presented at ACR, 2009. The HAQ or MDHAQ, not a joint count, lab test or X-ray, is Best Predictor in RA of… • Functional status (Pincus et al Arthritis Rheum 1984; Wolfe et al J Rheumatol 1991) • Work disability (Borg et al J Rheumatol 1991; Callahan et al J Clin Epidemiol 1992; Wolfe & Hawley J Rheumatol 1998; Fex et al J Rheumatol 1998; Sokka et al J Rheumatol 1999; Barrett et al Rheumatology 2000) • Costs (Lubeck et al Arthritis Rheum 1986) • Joint replacement surgery (Wolfe & Zwillich Arthritis Rheum 1998) • Death (Pincus et al Arthritis Rheum 1984, Ann Intern Med 1994; Wolfe et al J Rheumatol 1988, Arthritis Rheum 1994; Leigh & Fries J Rheumatol 1991; Callahan et al Arthritis Care Res 1996, 1997; Soderlin et al J Rheumatol 1998; Maiden et al Ann 9-10 Year Survival According to Quantitative Markers in Three Chronic Diseases Rheumatoid Arthritis Activities of Daily Living A Rheumatoid Arthritis - B >90% 81–90% 80 % Active “With Ease” 60 40 71–80% Survival (%) Survival (%) 100 >12 Years 80 9–12 Years 60 8 Years 40 20 70% 20 Formal Education Level 100 (Data from Pincus et al, 1987) (Data from Pincus et al, 1987) 20 60 80 100 100 Stage I 80 Stage II Stage III All Stages, All Causes Stage IV 60 40 0 Months Hodgkin’s Disease Anatomic Stage C Survival (%) 40 20 D 0 2 4 6 8 10 Years 40 60 80 100 Months Coronary Artery Disease # of Involved Vessels 80 60 40 20 (Data from Kaplan, 1972) 20 100 Survival (%) 0 1 Artery 2 Arteries 3 Arteries LCA (Data from Proudfit et al, 1978) 0 2 4 6 8 10 Years 5-Year Survival in 206 Patients With RA: Cohort #2 – 1985-1990 Rheumatoid Factor MHAQ Score 80 80 Survival (%) 100 Survival (%) 100 60 60 40 Absent (29) Present 20 (175) 0.00 (12) 0.01–0.99 (91) 1.00–1.99 (86) >2.00 (21) 40 20 0 0 0 12 24 36 48 Months After Baseline 60 0 12 24 36 48 Months After Baseline Callahan LF et al. Arthritis Care Res 10:381,1997 60 Significance of 8 variables as predictors of mortality in 53 RA cohorts Significant in multivariate analyses 100% 6% 4% 22% 30% Significant in univariate analyses 34% 17% 32% 23% 21% 39% 32% 46% Not Significant 50% 39% 75% 50% 50% 28% 25% 72% 0% 65% Physical Cofunction morbidities (N=18) (N=23) 45% 44% 37% 31% Rheumatoid factor (N=29) Extraarticular disease (N=18) ESR (N=19) Socioeconomic status (N=13) 22% 11% Joint count (N=18) Hand radiograph (N=18) Sokka T, Abelson B, Pincus T. Clin Exp Rheumatol 26(suppl):S35-61, 2008 Prediction of premature mortality according to blood pressure and cholesterol converted hypertension and hypercholesterolemia from optional treatments to major public health campaigns. Patient and physician global estimates for a rheumatology visit checklist? Relative efficiencies of 7 ACR Core Data Set measures in 4 adalimumab clinical trials 3.00 2.72 2.65 2.50 2.14 2.12 2.00 1.86 1.48 1.50 1.10 1.00 1.00 2.06 1.55 1.60 1.42 1.52 1.48 1.36 1.30 1.12 1.00 0.92 0.94 1.00 1.66 1.00 1.43 1.27 1.17 0.60 0.50 0.22 0.00 ARMADA DE011 DE019 STAR Tender Joint Count Swollen Joint Count Assessor Global CRP Function (HAQ) Pain Patient Global A proposed checklist of 10 measures for patients with rheumatic disease at all visits Patient MDHAQ self-report questionnaire measures 1. Function 2. Pain 3. Patient global estimate of status 4. RAPID3 (Routine Assessment of Patient Index Data) 5. Fatigue 6. Symptoms MDHAQ: Page 1 of 2 1. a - j: Physical function k, l, m: Psychological distress 2. Pain 3. RADAI Self-report joint count 4. Patient global estimate RAPID3 MDHAQ:Page 2 5. Review of systems 6. Morning stiffness 7. Change in status 8. Exercise 9. Fatigue 10.Recent medical history 11.Demographic data MD review Review of Symptoms (ROS) Quantitative patient MDHAQ scores in new rheumatology patients by diagnosis RA OA FM SLE Spondy Gout (n=174) (n=32) (n=196) (n=34) (n=30) (n=12) Function [0-10] 3.2 2.3 3.0 1.9 3.0 1.8 Pain [0-10] 5.4 4.4 6.5 3.7 5.9 5.8 PT Global [0-10] 5.4 4.4 6.1 4.3 5.1 3.8 RAPID3 [0-30] 13.7 10.0 15.4 8.5 13.4 10.2 Fatigue [0-10] 5.7 4.2 7.3 5.4 4.5 4.1 14.1 9.4 20.5 16.1 11.4 7.7 Symptoms [0-60] FM = fibromyalgia; Spondy = spondylarthropathy. Shaded: Patient measures: FN>3, PN5, PTGL5, FT5, RAPID3>12, SX>20. Quantitative demographic and laboratory data in new rheumatology patients by diagnosis RA OA FM SLE Spondy Gout (n=174) (n=32) (n=196) (n=34) (n=30) (n=12) 54.5 65.1 47.0 38.8 43.9 59.3 Disease duration (years) 8.4 6.3 5.9 9.1 11.3 9.1 Formal education (years) 13.0 15.0 13.7 13.6 14.9 13.8 Age (years) % Female 71.3% 65.6% 88.7% 85.3% 46.7% 16.7% ESR (mm/h) 29.7 22.2 16.8 28.9 26.5 11.1 CRP (mg/dL) [normal <10] 17.5 3.9 6.1 6.7 11.5 3.6 FM = fibromyalgia; Spondy = spondylarthropathy. Shaded: ESR >20, CRP >10. Highest ranked source of clinical information 588 >50%: 20-50%: <20%: MDs: Element Cong Heart Failure Diabetes Melllitus Hypertension Hyperlipidemia Lymphoma Pulmonary Fib Vital Signs Patient History Physical Exam Lab tests Other studies McCollum, Durusu Tanriover, Akalžn , H Yazici, Pincus: EULAR 2010 Rheumat Arthritis UlcerativeC oli-tis A proposed checklist of 10 measures for patients with rheumatic disease at all visits Patient MDHAQ self-report questionnaire measures 1. Function 2. Pain 3. Patient global estimate of status 4. RAPID3 (Routine Assessment of Patient Index Data) 5. Fatigue 6. Symptoms Physician global measures 7. Physician global estimate of status (DOC Global) 8. Inflammation 9. Damage 10. Non-inflammatory/non-damage 4 Physician global estimates: 1.Overall, 2. Inflammation, 3. Damage, 4. Neither The expertise of a rheumatologist is to determine whether a patient’s pain, fatigue, distress, etc. results from inflammation, damage or neither. Why not record scores? Quantitative physical examination data in RA • Joint count required for RA diagnosis • Joint count is most specific RA measure • Joint count has many limitations • Physician global estimates perform as well as formal joint counts to distinguish active from control treatment in clinical trials Quantitative physician global estimates in new patients by diagnosis – T Pincus RA OA FM SLE Spondy Gout (n=174) (n=32) (n=196) (n=34) (n=30) (n=12) DOC Global [0-10] 6.3 6.3 6.3 5.0 6.3 5.0 Inflammation [0-10] 7.0 3.3 2.3 3.6 7.7 6.0 Damage [0-10] 5.0 6.0 1.7 2.3 4.3 3.0 Non-inflammatory/ non-damage [0-10] 4.0 3.7 9.0 6.3 4.0 2.3 FM = fibromyalgia Spondy = spondylarthropathy Shaded: All DOC measures 5 Quantitative physician global estimates in new patients by diagnosis – M Bergman Variable RA OA FM SLE Spondy Gout Overall Physician Global (0-10) 4.03 3.25 4.36 2.00 3.33 2.23 Inflammation (0-10) 4.53 0.57 0.50 2.23 4.17 2.27 Damage (0-10) 2.40 3.83 0.77 0.37 1.58 0.43 Non-inflammatory, Non-damage (0-10) 1.03 0.83 5.13 0.37 1.17 0.43 FM = fibromyalgia Spondy = spondyloarthropathy Shaded = highest-scored scale for each diagnostic category Quantitative patient MDHAQ scores and physician global estimates in new rheumatology patients by diagnosis RA OA FM SLE Spondy Gout (n=174) (n=32) (n=196) (n=34) (n=30) (n=12) Patient MDHAQ self-report questionnaire measures for proposed checklist Function [0-10] Pain [0-10] PT Global [0-10] RAPID3 [0-30] Fatigue [0-10] Symptoms [0-60] 3.2 5.4 5.4 13.7 5.7 14.1 2.3 4.4 4.4 10.0 4.2 9.4 3.0 6.5 6.1 15.4 7.3 20.5 1.9 3.7 4.3 8.5 5.4 16.1 3.0 5.9 5.1 13.4 4.5 11.4 1.8 5.8 3.8 10.2 4.1 7.7 5.0 3.6 2.3 6.3 6.3 7.7 4.3 4.0 5.0 6.0 3.0 2.3 Physician global measures for proposed checklist DOC Global [0-10] Inflammation [0-10] Damage [0-10] Non-inflam/non-damage [0-10] 6.3 7.0 5.0 4.0 6.3 3.3 6.0 3.7 6.3 2.3 1.7 9.0 FM = fibromyalgia; Spondy = spondylarthropathy. Shaded: Patient measures: FN>3, PN5, PTGL5, FT5, RAPID3>12, SX>20. All DOC measures 5. Scientific method in medical care: standardized measurement is prerequisite • All rheumatology clinical measures are surrogates for pathogenic mechanisms – whether ESR, joint counts, or self-report questionnaire scores. • All measures require interpretation by a knowledgeable and caring physician. Is this the final version of a rheumatology visit checklist? No, it will be improved by suggestıons from rheumatologists like you from use in clinical care. Is it better to have 80% of the information in 100% of patients or 100% of the information in 5% of patients? T Pincus, F Wolfe J Rheumatol 32:575-577, 2005 Is care for a patient without a HAQ/MDHAQ/RAPID 3, analogous to care of a patient with hypertension without a blood pressure, or care of a patient with diabetes without hemoglobin A1C or glucose?