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Measures in RA: Joint counts, radiographs, laboratory tests, patient questionnaires advantages and disadvantages [email protected] Disclosures Theodore Pincus, MD Sources of Funding for Research: Amgen Inc.; BristolMyers Squibb Company Consulting Agreements: Abbott Laboratories; Amgen Inc.; Bristol-Myers Squibb Company; UCB Speakers’ Bureau/Honorarium Agreements: Abbott Laboratories; Wyeth Pharmaceuticals, Genentech Financial Interests/Stock Ownership: None Discussion of Off-Label, Investigational, or Experimental Drug Use: None It’s all about measurement “When you can measure what you are speaking about, and express it in numbers, you know something about it; but when you cannot measure it [and] express it in numbers, your knowledge is of a meager and unsatisfactory kind.” Lord Kelvin – quoted by: Buchanan W, Smythe H. J Rheumatol. 1982:9;653–4. Prevailing view of rheumatoid arthritis - 1984: “Patients with rheumatoid arthritis usually respond to a conservative program of nonsteroidal anti-inflammatory drugs, rest, and physical therapy…” Arthritis & Rheumatism 27:1344,1984 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 observational data in addition to clinical trials Pincus and Tugwell J Rheumatol 2006 Rheumatoid arthritis: disappointing long-term outcomes despite successful short-term clinical trials T Pincus J Clin Epidemiol 41(11):1037-1041, 1988 Some Pragmatic Limitations of Randomized Controlled Clinical Trials in Chronic Diseases J Clin Epidemiol 41:1037,1988; Arthritis Rheum 48:313, 2003 1.Relatively short observation period 2. Inclusion and exclusion criteria - most patients ineligible in most trials 3. Surrogate markers - may be suboptimal for actual outcomes, e.g., T cell counts vs. AIDS, tender joints vs. surgical replacement 4. Inflexible dosage schedules and concomitant drug therapies Standard Composite Treatment Effect* Effect in Standard Units 2 1.5 1 0.5 0 (n=28) (n=25) (n=11) (n=15) (n=28) (n=9) Plac AUR AntiM AZA Gold MTX (n=22) DPen (n=8) SSZ <.0001 <.0001 <.05 *Composite of grip strength(adjust for disease duration and trial length), tender joint count (adjust for initial TJC and blinding) and ESR Felson, Anderson, Meenan. Arthrit Rheum. 1990;33:1449. Estimated Continuation Estimated Continuation of Courses of 2nd Line Therapies Over 60 Months in RA Patients Azathioprine (56) Hydroxychloroquine (228) Methotrexate (253) Oral gold (84) Parenteral gold (269) Penicillamine (193) 1.0 0.8 0.6 0.4 0.2 0 0 10 20 30 40 50 60 Months Pincus, Marcum, Callahan. J Rheumatol. 1992;19:1885. RA Cohort #2-15 US sites 1985-90 Participating Rheumatologists • • • • • • • • F. Adams J. Barber W. Barth M. Britton G. Gordon J. Huston J.T. John J. Johnson TN CA DC CA PA TN TN TN • • • • • • • A. Kennedy FL R. Polk ID J. Raitt CA J. ReinertsenMN E. Schned MN J. Sergent TN A. Whelton FL Estimated Continuation of Courses of 2nd-Line Therapy Azathioprine (56) Hydroxychloroquine (228) Methotrexate (253) Oral gold (84) Parenteral gold (269) Penicillamine (193) 100 80 60 40 20 0 0 10 20 30 Months 40 50 60 Estimated Continuation (%) Estimated Continuation (%) All Courses Over 60 Months Initial Course Over 12 Months 10 0 8 0 6 0 4 0 Methotrexate (61) Hydroxychloroquine (130) Penicillamine (55) Parenteral gold (207) Oral gold (5) Azathioprine (19) 2 0 0 0 1 2 3 4 5 6 7 Months 8 9 10 1 1 Pincus, Marcum, Callahan. J Rheumatol. 1992;19:1885. 1 2 Severe functional declines, work disability, and increased mortality rates in seventy-five rheumatoid arthritis patients studied over nine years T Pincus, LF Callahan, WG Sale, AL Brooks, LE Payne, WK Vaughn Arthritis Rheum 27:864-872, 1984 Survival in rheumatoid arthritis 1973-1982 Pincus et al. Arthritis Rheum. 1984;27:864. J Rheumatol 1987;14:240 Survival of Patients With Rheumatoid Arthritis Versus Expected Survival in 10 Locales Expected for women Expected for men Women with RA Men with RA 40 0 0 2 4 6 8 10 Years 60 40 0 Vandenbroucke et al, 1984 Mutru et al, 1985 Netherlands Finland 100 5 10 15 20 25 Years “definite” RA 40 Patients with “classic” RA 0 Mitchell et al, 1986 Vollertsen et al, 1986 Minnesota Saskatchewan 100 80 80 Expected 60 Expected for women for women for men Expected for men 40 Expected Women with RA 60 Women with RA 20 Men with RA Men with RA 0 0 2 4 6 8 10 5 10 15 Years Years Survival (%) Survival (No.) Survival (%) 100 80 60 40 Expected for Expected for women men 20 Women with RA Men with RA 0 5 10 15 20 25 Years Women with OA Men with OA Women with RA Men with RA 100 80 60 Patients with Survival (%) 60 Survival (%) 80 100 80 60 Expected for women 40 Expected for men with RA 20 Women Men with RA 0 5 10 Years Rasker and Cosh, 1981 England 1.00 0.80 0.60 0.40 0.20 0 Expected for population Patients with “classic” RA 4 8 12 16 20 Years 4 8 1216 20 24 Years Pincus et al, 1987 Tennessee 100 80 60 40 20 0 Survival (%) 10 20 30 Years 100 80 Probability 0 100 Survival (%) 1000 800 600 Expected for 400 population 200 Patients with RA Monson and Hall, 1976 Allebeck et al, 1981 Massachusetts Sweden Uddin et al, 1970 Ontario Survival (%) Survival (No.) Cobb et al, 1953 Massachusetts Expected for women Expected for men Women with RA Men with RA 5 Years 10 Attributed Causes of Death in 2,262 RA Patients in 13 Series from Diverse Locales Compared to General Population Attributed Cause of Death Cardiovascular disease Cancer Infection Renal disease Pulmonary disease RA GI disease CNS disease Accidents Miscellaneous Unknown % of RA Deaths 42.1 14.1 9.4 7.8 7.2 5.3 4.2 4.2 1.0 6.4 0.6 % of 1977 US Deaths 41.0 20.4 1.0 1.1 3.9 <1 2.4 9.6 5.4 15.2 <1 Pincus T, Callahan LF. J Rheumatol. 1986;13:841. 9- to 10-Year Survival According to Quantitative Markers in Three Chronic Diseases A Rheumatoid Arthritis – Activities of Daily Living B 100 >90% 81%–90% 80 % Active “With Ease” 60 40 71%–80% 70% 20 Survival (%) Survival (%) 100 Rheumatoid Arthritis – Formal Education Level >12 Years 80 9–12 Years 60 8 Years 40 20 (Data from Pincus et al, 1987) (Data from Pincus et al, 1987) Months 0 40 60 80 100 Hodgkin Disease – Anatomic Stage 100 0 D Stage I 80 60 Stage II All Stages, All Causes Stage III Stage IV 40 20 (Data from Kaplan, 1972) 0 2 4 6 Years 8 10 Survival (%) Survival (%) C 20 Months 20 40 60 80 100 Coronary Artery Disease – No. of Involved Vessels 100 80 1 Artery 60 2 Arteries 40 3 Arteries LCA 20 (Data from Proudfit et al, 1978) 0 2 4 6 8 Years 10 Why Include Quantitative Measurement in Care of Patients with Rheumatic Diseases? Assess Prognosis – guides general approach to therapy Treatment Decisions – specific agents, changes Documentation – from visit to visit, compare patients Reimbursement –value of treatment by rheumatologist Examples of measures that convey prognostic significance Blood pressure 220/140 Total cholesterol 528 Creatinine 20 Glucose 785 ESR 110 CCP >100 units Complexities in assessment of patients with rheumatic diseases: 1. 2. 3. No single “gold standard” (eg, blood pressure, cholesterol) for clinical trials or standard care: therefore, indices of 37 measures. Laboratory tests limited in both diagnosis and treatment - primary criteria are clinical. Patient questionnaires to assess physical function, pain, global status, often best quantitative measures. American College of Rheumatology (ACR) Core Data Set & Disease Activity Score (DAS) 3 Physician/Assessor measures 1. Tender joint count (also in DAS) 2. Swollen joint count (also in DAS) 3. Assessor Global status 3 Patient self-report measures 4. Physical Function - HAQ, HAQ II, MDHAQ 5. Pain 6. Patient Global status (also in DAS) 1 Laboratory Measure 7. Acute phase reactant –ESR, CRP–also in DAS (8. Radiograph – longer than 1 year) Felson et al, Arth Rheum 36:729, 1993. van Riel, Br J Rheumatol 31:793, 1994. Types of Measures to Assess RA Joint count Radiograph Laboratory tests Patient self-report questionnaires Formal Joint Counts in Management of Patients With RA Most specific measure to assess RA Most important measure in clinical trials – 20, 50, 70% required for ACR improvement criteria 28-joint count as useful in clinical trials as 68–70 joint counts Some Limitations of Formal Joint Counts Joint counts have similar or lower relative efficiencies than global and patient measures to document differences between active and control treatments in clinical trials (Arthritis Rheum 48:625-630, 2003. Arthritis Rheum 52:1031-1036, 2005. J Rheumatol 33:2146-2152, 2006, Rheumatology, in press) Some Limitations of Formal Joint Counts Joint counts may improve over 5 years while progressive joint damage and functional disability may occur (Callahan et al, Arthritis Care Res 10:381-394, 1997) Some Limitations of Formal Joint Counts Joint counts are poorly reproducible Lewis et al. Br J Rheumatol 1988; 27:32. Hart et al. J Rheumatol 1985; 12:716. Klinkhoff et al. J Rheumatol 1988; 15:492. Thompson et al. J Rheumatol 1991; 18:661. Kvien et al. Ann Rheum Dis 2005; 64:1480. Scott DL et al. 2006; 15:579. Some Limitations of Formal Joint Counts Rheumatologists perform careful non-quantitative joint examination, but not formal joint count, at most visits in usual care (Pincus and Segurado, Ann Rheum Dis 65:820-822, 2006.) 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% 1–24% of visits 25–49% of visits 50–74% of visits 75–99% of visits Always 32% 11% 14% 16% 14% 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) 1985 30 RF- 25 RF+ 20 15 10 5 0 0 5 10 Disease duration 15 2000 Larson score for hands, % of max Larson score for hands, % of max Cross-Sectional Data in RA Patients: Cohort #2- 1985 and Cohort #4-2000: Larsen X-Ray score,% of maximum 30 25 20 RF+ 15 10 RF 55 positive RF- 0 00 0 5 10 15 Disease duration Pincus, Sokka, Kautiainen, Arth Rheum 52:1009, 2005 Predicting Mortality in RA: Most Baseline Measures Are Worse in Patients Who Will Die Over a 5-Year Period Mean Baseline Values P Value Alive Dead Age (years) ARA functional class Number of comorbidities Walking time ESR mHAQ score Learned helplessness Global self-report Number of extra-articular features Duration of disease Years of education Joint count 55.1 2.2 1.1 10.8 33.8 1.98 2.41 2.6 0.2 9.1 10.8 12.8 65.5 2.6 2.1 16.8 48.3 2.32 2.55 3.0 0.5 12.7 9.4 15.9 < 0.001 < 0.001 < 0.001 < 0.001 0.004 0.005 0.007 0.01 0.02 0.03 0.03 0.04 Radiograph score RF titer Pain 1.2 2.7 5.40 1.4 2.9 5.19 0.20 0.28 0.68 Callahan LF, et al. Arthritis Care Res. 1997;10:381–394. RA Cohort #2- Cox Proportional Hazards Model Analyses Including Demographic, Functional, SelfReport, Joint Count, X-ray, Laboratory and Disease Variables in 206 patients Age Univariate RR P (95% CL) Value 1.07 <0.001 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 --- Arthritis Care Res 10:381,1997 0.02 0.02 ------- Predictors of mortality in RA n=1922 Odds Ratio HAQ 2.93 Pt Global severity 1.28 Pain 1.25 Depression 1.34 Anxiety 1.28 Grip strength 1.01 ESR 1.01 RF, titer 1.13 Hematocrit 1.06 Larsen X-ray score 1.04 Duration 1.01 Joint count 1.01 Age Comorbidities Male 1.09 1.19 2.10 z score p value 11.1 <0.001 8.5 <0.001 8.3 <0.001 8.8 <0.001 7.2 <0.001 6.2 <0.001 5.7 <0.001 4.6 <0.001 3.8 <0.001 4.7 0.002 2.1 0.036 0.76 0.445 11.9 4.69 5.28 <0.001 <0.001 <0.001 Wolfe et al Arth Rheum 48:1530, 2003 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 and Hawley. J Rheumatol. 1998, Fex et al. J Rheumatol 1998, Sokka et al. J Rheumatol 1999, Barrett et al. Rheumatology 2000, Puolakka et al. Ann Rheum Dis 64:130-133, 2005 ) Costs (Lubeck et al. Arthritis Rheum. 1986) Joint replacement surgery (Wolfe and Zwillich. Arthritis Rheum. 1998) Death (Pincus et al. Arthritis Rheum. 1984, Ann Intern Med.1994, Wolfe et al. J Rheumatol 1988, Leigh&Fries J Rheumatol 1991, Wolfe et al. Arthritis Rheum. 1994, Callahan et al. Arthrits Care Res 1996, 1997, Soderlin et al. J Rheumatol 1998, Maiden et al. Ann Rheum Dis 1999, Sokka et al. Ann Rheum Dis 2004) Some Problems With Radiographs in RA 1. Quantitative score tedious to perform 2. Treatment initiated prior to erosions – MRI, ultrasound are more sensitive 3. Radiographic damage has poor prognostic value for work disability, death and even joint replacement Laboratory Tests in Diagnosis and Management of Patients With RA 1. Most important measure in most clinical situations, e.g., cholesterol, hemoglobin, creatinine, glucose, etc. 2. Many tests may be of value – CBC, ESR, CRP, RF, anti-CCP 3. No work for the rheumatologist ESR Values in Patients With RA ESR ≥ 28 mm/h ESR < 28 mm/h Females 63% 37% Males 55% 45% Wolfe F, Michaud K, J Rheumatol. 1994;21:1227–1237. ESR and CRP at 1st Visit to Clinic a. Jyvaskyla, FIN CRP ESR ≥28 mm/hr <28 mm/hr Total >10 mg/L 775 (44%) 202 (12%) <10 mg/L 199 (11%) 568 (33%) Total 974 (55%) 770 (45%) b. Nashville, TN, USA CRP ESR ≥28 mm/hr <28 mm/hr 977 (56%) 767 (44%) 1744 (100%) >10 mg/L <10 mg/L Total 70 (41%) 100 (59%) 170 (100%) 48 (28%) 29 (17%) 77 (45%) 22 (13%) 71 (42%) 93 (55%) Total Sokka and Pincus, EULAR 2006 The level of inflammation in rheumatoid arthritis is determined early and remains stable over the longterm course of the illness F Wolfe, T Pincus J Rheumatol 28:1817-1824, 2001 Some Problems With Laboratory Tests in Diagnosis and Management of RA 1. ESR & CRP - normal in 40% at presentation 2. Anti-CCP & RF - negative in 20–50% of patients 3. Treatment decisions are based primarily on clinical criteria 4. Lab tests have good prognostic value for radiographic damage but poor prognostic value for work disability or death CRP = C-reactive protein; CCP = cyclic citrullinated protein Limitations of individual measures in RA: need for an index for patient assessment ACR DAS28 CDAI Core # Tender joints √ √ √ # Swollen joints √ √ √ MD global √ √ ESR or CRP √ √ -Patient function √ --Patient pain √ --Patient global √ √ √ Disease Activity Score (DAS) in Rheumatoid Arthritis Based on score on visits with DMARD change: 0.56 X square root (tender joint count 28) + 0.28 X square root (swollen joint count 28) + 0.70 X log e (ESR) + 0.014 (patient assessment of global status or activity) Total DAS= 0-10 Van der Heijde et al, J Rheumatol 20:579,1993, Prevoo et al, Arthritis Rheum 38:44, 1995. DAS28 Categories – Activity Level Fransen and van Riel Clin and Exp Rheumatol, 2005 Level 0–2.6 = 2.6–3.19 = 3.2–5.1 = Interpretation Remission – therapy is working Low – maybe change therapy Moderate – consider strongly change in therapy 5.11–10 = High – change therapy or have a good reason not to do so Some Limitations of DAS 1. Requires complex math – need calculator or website 2. Requires laboratory tests – often uninformative or unavailable 3. Requires formal quantitative joint count – often not done, poorly reliable Clinical Disease Activity Index (CDAI) Aletaha and Smolen Clin Exp Rheumatol 23:S100, 2005. No lab test or complex math Can be calculated in usual care Tender joint count 28 Swollen joint count 28 Patient global assessment Patient global assessment Total CDAI = = = = = 28 28 10 10 0-76 CDAI Categories – Activity Level Aletaha and Smolen, 2005 Level Interpretation 0–2.8 = Remission – therapy is working 2.81–10 = Low – maybe change therapy 10.1–22 = Moderate – consider strongly change in therapy 22–76 = High – change therapy or have a good reason not to do so CDAI Overcomes 2 of 3 Limitations of DAS 1. No complex math 2. No laboratory test 3. But… requires formal quantitative joint count Is it possible to develop index to assess patients with RA (and other rheumatic diseases) that does not require a formal quantitative joint count? Limitations of individual measures in RA: need for an index for patient assessment ACR DAS28 CDAI # Tender joints √ √ √ # Swollen joints √ √ √ MD global √ √ ESR or CRP √ √ -Patient function √ --Patient pain √ --Patient global √ √ √ RAPID3 ----√ √ √ Multidimensional Health Assessment Questionnaire AT THIS MOMENT, are you able to: Dress yourself, including tying shoelaces and doing buttons? Get in and out of bed? Lift a full cup or glass to your mouth? Walk outdoors on flat ground? Wash and dry your entire body? Bend down to pick up clothing from the floor? Turn regular faucets on and off? Get in and out of a car, bus, train or airplane? Walk two miles? Participate in sports and games as you would like? Get a good night’s sleep? Deal with feelings of anxiety or being nervous? Deal with feelings of depression or feeling blue? Without ANY Difficulty With SOME Difficulty With MUCH Difficulty UNABLE To Do ---------------------------------------- ---------------------------------------- ---------------------------------------- ---------------------------------------- How much pain have you had because of your condition IN THE PAST WEEK? Place a mark on the line below to indicate how severe your pain has been: NO PAIN 0 0.5 1.0 1.5 2.0 2.5 3.0 3.5 4.0 4.5 5.0 5.5 6.0 6.5 7.0 7.5 8.0 8.5 9.0 9.5 10 PAIN AS BAD AS IT COULD BE Considering all the ways in which your illness and and health conditions may affect you at this time, place a mark to show how you are doing: VERY WELL 0 0.5 1.0 1.5 2.0 2.5 3.0 3.5 4.0 4.5 5.0 5.5 6.0 6.5 7.0 7.5 8.0 8.5 9.0 9.5 10 VERY POORLY Routine Assessment of Patient Index Data (RAPID3) Score: 3 Patient Core Data Set Measures on HAQ and MDHAQ Physical function + 0-10 Pain = 0-10 Patient global estimate = 0-10 Total = 0-30 divide by 3 = 0-10 9- to 10-Year Survival According to Quantitative Markers in Three Chronic Diseases A Rheumatoid Arthritis – Activities of Daily Living B 100 >90% 81%–90% 80 % Active “With Ease” 60 40 71%–80% 70% 20 Survival (%) Survival (%) 100 Rheumatoid Arthritis – Formal Education Level >12 Years 80 9–12 Years 60 8 Years 40 20 (Data from Pincus et al, 1987) (Data from Pincus et al, 1987) Months 0 40 60 80 100 Hodgkin’s Disease – Anatomic Stage 100 0 D Stage I 80 60 Stage II All Stages, All Causes Stage III Stage IV 40 20 (Data from Kaplan, 1972) 0 2 4 6 Years 8 10 Survival (%) Survival (%) C 20 Months 20 40 60 80 100 Coronary Artery Disease – # of Involved Vessels 100 80 1 Artery 60 2 Arteries 40 3 Arteries LCA 20 (Data from Proudfit et al, 1978) 0 2 4 6 8 Years 10 Relative Risk of Death Over 12-15 Years in rheumatoid arthritis (RA) and cardiovascular (CV) disease according to baseline severity indicators RA – 75 pts – 15 yrs – Pincus et al, Ann Int Med 120:26,1994 Functional status on patient questionnaire # of Involved Joints < vs > 91.5% “with ease” > vs < 18 joints 2.9:1 3.0:1 CV disease – 312,000 pts – 12 yrs – Neaton et al, Arch Int Med 152:56,1992 Serum cholesterol Systolic blood pressure Diastolic blood pressure Smoking >245 vs <182 mg/Dl >142 vs <118 mmHg >92 vs <76 mmHg >26 vs 0 cigarettes/day 2.9:1 3.0:1 2.9:1 2.9:1 Data adjusted for age, sex, education, disease duration 5-Year Survival in 206 Patients With RA: Cohort 2 – 1985–1990 Rheumatoid Factor MHAQ Score 80 80 Survival (%) 100 Survival (%) 100 60 60 Absent (29) Present (175) 40 20 20 0 0 0 12 24 36 0.00 (12) 0.01–0.99 (91) 1.00–1.99 (86) >2.00 (21) 40 48 60 Months After Baseline Callahan LF et al. Arthritis Care Res. 1997;10:381-394. 0 12 24 36 48 Months After Baseline 60 Multi-Dimensional Health Assessment Questionnaire (R771-NP2) This questionnaire includes information not available from blood tests, X-rays, or any source other than you. Please try to answer each question, even if you do not think it is related to you at this time. Try to complete as much as you can yourself, but if you need help, please ask. There are no right or FOR OFFICE wrong answers. Please answer exactly as you think or feel. Thank you. USE ONLY MDHAQ Page 1 1. Please check (√) the ONE best answer for your abilities at this time: Without With With OVER THE LAST WEEK, were you able to: ANY SOME MUCH Difficulty Difficulty Difficulty a. Dress yourself, including tying shoelaces and doing buttons? _____0 _____1 _____2 b. Get in and out of bed? _____0 _____1 _____2 c. Lift a full cup or glass to your mouth? _____0 _____1 _____2 d. Walk outdoors on flat ground? _____0 _____1 _____2 e. Wash and dry your entire body? _____0 _____1 _____2 f. Bend down to pick up clothing from the floor? _____0 _____1 _____2 g. Turn regular faucets on and off? _____0 _____1 _____2 h. Get in and out of a car, bus, train, or airplane? _____0 _____1 _____2 i. Walk two miles or three kilometers, if you wish? _____0 _____1 _____2 j. Participate in recreational activities and sports _____0 _____1 _____2 as you would like, if you wish? k. Get a good night’s sleep? _____0 _____1.1 _____2.2 l. Deal with feelings of anxiety or being nervous? _____0 _____1.1 _____2.2 m.Deal with feelings of depression or feeling blue? _____0 _____1.1 _____2.2 UNABLE To Do _____3 _____3 _____3 _____3 _____3 _____3 _____3 _____3 _____3 _____3.3 _____3.3 _____3.3 NO PAIN AS BAD AS PAIN 0 0.5 1.0 1.5 2.0 2.5 3.0 3.5 4.0 4.5 5.0 5.5 6.0 6.5 7.0 7.5 8.0 8.5 9.0 9.5 10 IT COULD BE 3. Please place a check (√) in the appropriate spot to indicate the amount of pain you are having today in each of the joint areas listed below: None Mild Moderate Severe None Mild Moderate Severe i.RIGHT FINGERS j.RIGHT WRIST k.RIGHT ELBOW l.RIGHT SHOULDER m.RIGHT HIP n.RIGHT KNEE o.RIGHT ANKLE p.RIGHT TOES q.NECK r.BACK 2 4. Considering all the ways in which illness and health conditions may affect you at this time, please indicate below how you are doing: VERY WELL 0 0.5 1.0 1.5 2.0 2.5 3.0 3.5 4.0 4.5 5.0 5.5 6.0 6.5 7.0 7.5 8.0 8.5 9.0 9.5 10 For Office Use Only: RAPID 3 Please turn to the other side RAPID 3 (0-10) RAPID 4 VERY POORLY 16=5.3 17=5.7 18=6.0 19=6.3 20=6.7 21=7.0 22=7.3 23=7.7 24=8.0 25=8.3 26=8.7 27=9.0 28=9.3 29=9.7 30=10 2.PN (0-10) 4.PTGL (0-10) RAPID 3 (0-30) 3.a-pPTJT(0-10) 1=0.2 25=5.2 2=0.4 26=5.4 3=0.6 27=5.6 4=0.8 28=5.8 5=1.0 29=6.0 6=1.3 30=6.3 7=1.5 31=6.4 8=1.7 32=6.7 9=1.9 33=6.9 10=2.1 34=7.1 11=2.3 35=7.3 12=2.5 36=7.5 13=2.7 37=7.7 14=2.9 38=7.9 15=3.1 39=8.1 16=3.3 40=8.3 17=3.5 41=8.5 18=3.8 42=8.8 19=4.0 43=9.0 20=4.2 44=9.2 21=4.4 45=9.4 22=4.6 46=9.6 23=4.8 47=9.8 24=5.0 48=10 ? ? ? ? RAPID 4 (0-40) RAPID 4 (0-10) NR: 1=0.3, 2=0.7, 3=1.0 LS: 4=1.3, 5=1.7, 6=2.0 NR: 1=0.3, 2=0.5, 3=0.8, 4=1.0 LS: 5=1.3, 6=1.5, 7=1.8, 8=2.0 MS: 7=2.3, 8=2.7, 9=3.0, 10=3.3, 11=3.7, 12=4.0 MS: 9=2.3, 10=2.5, 11=2.8, 12=3.0, 13=3.3, 14=3.5, 15=3.8, 16=4.0 HS: 13=4.3, 14=4.7, 15=5.0, 16=5.3, 17=5.7,18=6.0, HS: 17=4.3, 18=4.5, 19=4.8, 20=5.0, 21=5.3, 22=5.5, 23=5.8, 24=6.0, 19=6.3, 20=6.7, 21=7.0, 22=7.3, 23=7.7, 24=8.0, 25=6.3, 26=6.5, 27=6.8, 28=7.0, 29=7.3, 30=7.5, 31=7.8, 32=8.0, 25=8.3, 26=8.7, 27=9.0, 28=9.3, 29=9.7, 30=10.0 33=8.3, 34=8.5, 35=8.7, 36=9.0, 37=9.3, 38=9.5, 39=9.8, 40=10.0 NR: 1=0.2, 2=0.4, 3=0.6, 4=0.8 5=1.0 LS: 6=1.2, 7=1.4, 8=1.6, 9=1.8, 10=2.0, RAPID 5 MS:11=2.2, 12=2.4, 13=2.6, 14=2.8, 15=3.0, 16=3.2, 17=3.4, 18=3.6, 19=3.8, 20=4.0 (0-10) HS: 21=4.2, 22=4.4, 23=4.6, 24=4.8, 25=5.0, 26=5.2, 27=5.4, 28=5.6, 29=5.8, 30=6.0, 31=6.2, 32=6.4, 33=6.6, 34=6.8, 35=7.0, 36=7.2, 37=7.4, 38=7.6, 39=7.8, 40=8.0, 41=8.2, 42=8.4, 43=8.6, 44=8.8, 45=9.0, 46=9.2, 47=9.4, 48=9.6, 49=9.8, 50=10.0 Copyright: Health Report Services, Telephone 615-936-2151, E-mail [email protected] 1=0.3 2=0.7 3=1.0 4=1.3 5=1.7 6=2.0 7=2.3 8=2.7 9=3.0 10=3.3 11=3.7 12=4.0 13=4.3 14=4.7 15=5.0 _____3 2. How much pain have you had because of your condition OVER THE PAST WEEK? Please indicate below how severe your pain has been: a.LEFT FINGERS b.LEFT WRIST c.LEFT ELBOW d.LEFT SHOULDER e.LEFT HIP f.LEFT KNEE g.LEFT ANKLE h.LEFT TOES 1.a-j FN (0-10) \ \\ MDGLOBAL(0-10)) RAPID 5 (0-50) HAQ and Multidimensional HAQ (MDHAQ) 1st report Patient completion No. ADL Pain VAS Pt Global VAS Psych, sleep RADAI self-report joint count Fatigue Review of systems Medical history Demographic data Social history Scoring templates Index MD scan (“eyeball”) Time to score HAQ MDHAQ 1980 5–10 min 20 10 cm line 10 cm line No 1999 5–10 min 10 21 circles 21 circles Sleep, anxiety, depression No No No No No No No No 30 secs 40 secs Yes VAS 60 symptoms Surgery, side effects Yes Yes Yes RAPID 5 secs 10 secs HAQ & anti-CCP – 2 measures of RA 1st report Advance HAQ 1980 Quantitate physical function Related to pathogenesis ---Useful in diagnosis + % abnormal in RA >90% Monitor pt status ++++ Predict work disability ++++ Predict mortality ++++ Cost appx $10 % of patients measured 20% anti-CCP 1996 Recognize RA in RF patients ++++ ++ 60-70% + ? ? appx $100 80% A Practical System That (Almost) Works For Routine Assessment of Functional Status, Fatigue and Psychological Distress 1. Patient given 2-page questionnaire by receptionist: completed in waiting room 2. Nurse (or physician) reviews and/or completes medication data 3. Physician does as little as possible: completes brief data (may include joint count) 4. Office staff enters flow sheet with laboratory data Considering all the ways in which illness and health conditions may affect you at this time, please indicate below how you are doing: VERY VERY WELL 0 0.5 1.0 1.5 2.0 2.5 3.0 3.5 4.0 4.5 5.0 5.5 6.0 6.5 7.0 7.5 8.0 8.5 9.0 9.5 10 POORLY VERY WELL ______________________________________________ VERY POORLY RADAI Self-Report Joint Count 3. Please place a check (√) in the appropriate spot to indicate the amount of pain you are having today in each of the joint areas listed below: None Mild Moderate Severe None a.LEFT FINGERS b.LEFT WRIST c.LEFT ELBOW d.LEFT SHOULDER e.LEFT HIP f.LEFT KNEE g.LEFT ANKLE h.LEFT TOES i.RIGHT FINGERS j.RIGHT WRIST k.RIGHT ELBOW l.RIGHT SHOULDER m.RIGHT HIP n.RIGHT KNEE o.RIGHT ANKLE p.RIGHT TOES q.NECK r.BACK Stucki G et al. Arthritis Rheum. 1995;38:795-798. Mild Moderate Severe Symptom Checklist From MDHAQ Please check (√) if you have experienced any of the following over the last month: __Fever Weight gain (>10 lb) Weight loss (<10 lb) Feeling sickly Headaches Unusual fatigue Swollen glands Loss of appetite Skin rash or hives Unusual bruising or bleeding Other skin problems Loss of hair Dry eyes Other eye problems Problems with hearing Ringing in the ears Stuffy nose Sores in the mouth Dry mouth Problems with smell or taste __Lump in your throat Cough Shortness of breath Wheezing Pain in the chest Heart pounding (palpitations) Trouble swallowing Heartburn or stomach gas Stomach pain or cramps Nausea Vomiting Constipation Diarrhea Dark or bloody stools Problems with urination Gynecologic (female) problems Dizziness Loss of balance Muscle pain, aches, or cramps Muscle weakness __Paralysis of arms or legs Numbness or tingling in arms/legs Fainting spells Swelling of hands Swelling of ankles Swelling in other joints Joint pain Back pain Neck pain Use of drugs not sold in stores Smoked cigarettes More than 2 alcoholic drinks/day Depression - feeling blue Anxiety - feeling nervous Problems with thinking Problems with memory Problems with sleeping Sexual problems Burning in sex organs Problems with social activities Recent Medical History – Self-report Over the last 6 months have you had [please check (√)]: No No No No No No No No No No No No Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes An operation Inpatient hospitalization A new illness, accident or trauma An important new symptom Side effect(s) of any drug Cigarettes regularly Change(s) of arthritis drugs or other drugs Change of address Change of marital status Change of job or work duties, quit work, retired Change of medical insurance, Medicare, etc. Change of primary care or other doctor Please explain any “yes" answer below, or indicate any other health matter that affects you: ___________________________________________________________ RA 61 yo M (#9) Onset: 01/1996 Visit 1 Visit Date Function (0-3) Pain (0-10) Global (0-10) ESR Prednisone Methotrexate 11/4/03 0.8 9.6 8.9 43 N3qd N10qw Folic Acid N1qd Tylenol w/Codeine 30tid Naproxen 880q6h N = new drug, C = change in dose, T = taper, D/C = discontinue RA 61 yo M (#9) Onset: 01/1996 Visit 2 Visit Date 11/4/03 1/13/04 0.8 9.6 8.9 43 0 0.3 0.3 8 N3qd 1bid N10qw C20qw Folic Acid N1qd 1qd Tylenol w/Codeine 30tid 30tid 880q6h 440bid Function (0-3) Pain (0-10) Global (0-10) ESR Prednisone Methotrexate Naproxen N = new drug, C = change in dose, T = taper, D/C = discontinue RA 61 yo M (#9) Onset: 01/1996 Visit 3 Visit Date 11/4/03 1/13/04 4/20/04 0.8 9.6 8.9 43 0 0.3 0.3 8 0.1 0.2 0.3 13 N3qd 1bid 1bid N10qw C20qw 20qw Folic Acid N1qd 1qd 1qd Tylenol w/Codeine 30tid 30tid D/C 880q6h 440bid 440bid Function (0-3) Pain (0-10) Global (0-10) ESR Prednisone Methotrexate Naproxen N = new drug, C = change in dose, T = taper, D/C = discontinue RA 61 yo M (#9) Onset: 01/1996 Visit 4 Visit Date 11/4/03 1/13/04 4/20/04 9/28/04 0.8 9.6 8.9 43 0 0.3 0.3 8 0.1 0.2 0.3 13 0 0.6 N3qd 1bid 1bid C3bid N10qw C20qw 20qw 15qw Folic Acid N1qd 1qd 1qd 1 qd Tylenol w/Codeine 30tid 30tid D/C Function (0-3) Pain (0-10) Global (0-10) ESR Prednisone Methotrexate 1.0 10 N = new drug, C = change in dose, T = taper, D/C = discontinue RA 61 yo M (#9) Onset: 01/1996 Visit 5 Visit Date 11/4/03 1/13/04 4/20/04 9/28/04 12/28/04 0.8 9.6 8.9 43 0 0.3 0.3 8 0.1 0.2 0.3 13 0 0.6 1.0 10 0 6.0 5.5 14 N3qd 1bid 1bid C3bid 3bid N10qw C20qw 20qw 15qw C25qw Folic Acid N1qd 1qd 1qd 1 qd 1qd Tylenol w/Codeine 30tid 30tid D/C 880q6h 440bid 440bid 440bid 440bid Function (0-3) Pain (0-10) Global (0-10) ESR Prednisone Methotrexate Naproxen Adalimumab N40qow N = new drug, C = change in dose, T = taper, D/C = discontinue RA 61 yo M (#9) Onset: 01/1996 Visit 10 Visit Date 11/4/03 1/13/04 4/20/04 9/28/04 12/28/04 12/20/05 0.8 9.6 8.9 43 0 0.3 0.3 8 0.1 0.2 0.3 13 0 0.6 1.0 10 0 6.0 5.5 14 0 1 1 4 N3qd 1bid 1bid C3bid 3bid T3bid N10qw C20qw 20qw 15qw C25qw 15qw Folic Acid N1qd 1qd 1qd 1 qd 1qd 1qd Tylenol w/Codeine 30tid 30tid D/C 880q6h 440bid 440bid 440bid 440bid Function (0-3) Pain (0-10) Global (0-10) ESR Prednisone Methotrexate Naproxen Adalimumab N40qow N = new drug, C = change in dose, T = taper, D/C = discontinue 40qow RAPID3 vs DAS in 285 RA Patients Spearman correlation rho = 0.657 RAPID3 vs CDAI in 285 RA Patients Spearman Correlation rho = 0.738 DAS28, CDAI and RAPID Categories DAS Categories Fransen and van Riel, 2005 <2.6 = Remission 2.6–3.19 = Low Activity 3.2–5.1 = Moderate Activity >5.1 = High Activity CDAI Categories Aletaha and Smolen, 2005 >22 = High Activity 10.1–22.0 = Moderate Activity 2.9–10.0 = Low Activity <2.8 = Remission Proposed RAPID Categories <1.0 = Near Remission – therapy is working 1.01–2 = Low Severity – maybe change therapy 2.01–4.0 = Moderate Severity – consider strongly change in therapy >4.0 = High Severity – change therapy or have a good reason not to do so DAS28 Compared to RAPID3 Scores in 285 Patients at 3 Sites RAPID 3 Severity DAS28 Activity 4.1–10= High 2.1–4.0= Moderate 1.1–2.0= Low 0–1.0=Near Remission Total >5.1= High 37 (74%) 11 (22%) 1 (2%) 1 (2%) 50 (17%) 3.2–5.1= Moderate 39 (43%) 27 (30%) 16 (18%) 8 (9%) 90 (32%) 2.6–3.19= Low 4 (10%) 15 (38%) 10 (25%) 11 (27%) 40 (14%) 0–2.6= Remission 10 (10%) 18 (17%) 24 (23%) 53 (50%) 105 (37%) Total 90 (31%) 71 (25%) 51 (18%) 73 (26%) 285 CDAI Compared to RAPID3 Scores in 285 Patients at 3 Sites RAPID 3 Severity CDAI Activity 4.1–10= High 2.1–4.0= Moderate 1.1–2.0= Low 0–1.0=Near remission Total >22= High 39 (78%) 9 (18%) 1 (2%) 1 (2%) 50 (17%) 10.1–22= Moderate 36 (40%) 33 (36%) 15 (17%) 6 (7%) 90 (32%) 2.9–10= Low 15 (16%) 28 (30%) 25 (27%) 25 (27%) 93 (33%) 0 (0%) 1 (2%) 10 (19%) 41 (79%) 52 (18%) 90 (31%) 71 (25%) 51 (18%) 73 (26%) 285 0–2.8= Remission Total Changes in RAPID3 Scores Over 5 Years in RA Patients in Usual Care 1996-2001 Patients in Each RAPID3 Category (%) 100% RAPID3 categories: 53% 37% 29% 36% 30% 75% 25% 33% 30% 25% 50% 30% 27% 25% 3% Baseline (N=60) 12% 28% 17% 13% 0% 18% 18% 21% 13% 6 mo (N=60) 12 mo (N=55) 24 mo (N=56) 60 mo (N=43) High severity (>4) Moderate severity (2.01-4) Low severity (1.01-2) Near remission (1) Self-report scores of all 60 new RA patients seen between 1996-2001 6, 12, 24, and 60 months after baseline 6 Mean values 5 Fatigue Pain Pt global Function RAPID 4 3 2 1 0 Baseline 6 mo 12 mo 24 mo 60 mo Multidimensional Health Assessment Questionnaire AT THIS MOMENT, are you able to: Dress yourself, including tying shoelaces and doing buttons? Get in and out of bed? Lift a full cup or glass to your mouth? Walk outdoors on flat ground? Wash and dry your entire body? Bend down to pick up clothing from the floor? Turn regular faucets on and off? Get in and out of a car, bus, train or airplane? Walk two miles? Participate in sports and games as you would like? Get a good night’s sleep? Deal with feelings of anxiety or being nervous? Deal with feelings of depression or feeling blue? Without ANY Difficulty With SOME Difficulty With MUCH Difficulty UNABLE To Do ---------------------------------------- ---------------------------------------- ---------------------------------------- ---------------------------------------- How much pain have you had because of your condition IN THE PAST WEEK? Place a mark on the line below to indicate how severe your pain has been: NO PAIN 0 0.5 1.0 1.5 2.0 2.5 3.0 3.5 4.0 4.5 5.0 5.5 6.0 6.5 7.0 7.5 8.0 8.5 9.0 9.5 10 PAIN AS BAD AS IT COULD BE Considering all the ways in which your illness and and health conditions may affect you at this time, place a mark to show how you are doing: VERY WELL 0 0.5 1.0 1.5 2.0 2.5 3.0 3.5 4.0 4.5 5.0 5.5 6.0 6.5 7.0 7.5 8.0 8.5 9.0 9.5 10 VERY POORLY RAPID (Routine Assessment of Patient Index Data) Measures Index: RAPID 3 RAPID 4 PTJC RAPID 4 MDJC RAPID5 Physical Function √ √ √ √ Pain √ √ √ √ √ √ √ √ Patient Global Estimate Patient Joint Count (RADAI) MD/Assessor Joint Count MD/Assessor Global Estimate √ √ √ √ Spearman Correlation Coefficients in 274 Patients with RA – All p<0.001 (#) = Number of identical measures Measure CDAI RAPID3 RAPID4PTJC RAPID4MDJC RAPID 5 DASvs 0.84 (3) 0.66 (1) 0.65 (1) 0.73 (3) 0.69 (1) CDAI vs --0.74 (1) 0.74 (1) 0.83 (3) 0.80 (2) All results, P <0.001 DAS vs RAPID in AIM Abatacept Trial DAS28 RAPID2 RAPID3 RAPID 4-MD RAPID 4-JC RAPID5 Mean Change ( % ) 0% -10% -20% -30% -21% -25% -28% -27% -30% -32% Control Abatacept -40% -43% -47% -50% -54% -60% -52% -56% -61% -70% Pincus , Maclean, Hines, Bergman, Yazici,. EULAR. 2007 Some limitations of patient self-report questionnaires 1. Need for translation – language issues 2. Cultural and linguistic issues 3. Possibility of “gaming” by patient, health professional to provide desired responses 4. Not specific to any disease Can a Multi-Dimensional Health Assessment Questionnaire (MDHAQ) and Routine Assessment of Patient Index Data (RAPID) scores be informative in patients with all rheumatic diseases? Pincus T, Sokka T. Best Pract Res Clin Rheumatol. 2007;21:733-753. The MDHAQ in Clinical Rheumatology • In rheumatoid arthritis, the MDHAQ distinguishes MTX or LEF from placebo in a clinical trial as effectively as a joint count or the ACR 20 • In osteoarthritis, the MDHAQ distinguishes NSAID from acetaminophen as effectively as the WOMAC • In fibromyalgia, the MDHAQ distinguishes patients from those with rheumatoid arthritis as effectively as an ESR Pain/MHAQ Ratio in RA and Fibromyalgia P-VAS/D-ADL Ratio 10 9 2 Years 8 >2 Years 7 6 5 4 3 2 1 0 Rheumatoid Arthritis Non-Inflammatory Diffuse Muskuloskeletal Pain Callahan and Pincus. Arthritis and Rheumatism. 1990;33:1317. DNA Binding of Serums- SLE and Control Patients % DNA Bound 100 90 Other = Diseased controls 80 SS = Sjögren’s Syndrome 70 SLE = Unselected Patients with SLE 60 50 40 30 Value of 20% indicates abnormal binding activity 20 10 0 Normal (84)Other (57)SS (24) SLE (44) Pincus et al. NEJM. 1969;281:701. SLE 39 yo F — Onset: 09/2004 Education: 12 Visit Date Function (0-10) Pain (0-10) Global (0-10) RAPID3 (0-30) RAPID3 (0-10) ESR Ibuprofen Prednisone Solumedrol Mycophenolate mofetil Hydroxychloroquine 15 Feb 05 17 May 05 4.3 5.6 6.5 16.4 5.5 66 0 2 6 8 2.7 36 19 Jul 05 20 Sep 05 23 May 06 26 Sep 06 0 4 3 7 2.3 — 0 3.5 2 5.5 1.8 8 0 0.4 0.1 0.5 0.2 11 0 0.5 0.5 1 0.3 15 T-5 qd 5 qd C-4 qd 4 qd 0-600 tid 600 tid N-5 qd C-10 qd N-80 N-500 bid 1000 bid 1000 bid 1000 bid 1000 bid N-200 bid D-200 bid N=new drug; C=change in dose; T=taper; D/C=discontinue. Quantitative Monitoring of a Patient With SLE over 180 days: ESR, anti-DNA, CH50 Creat Clear (mL/min) LE Prep CH50 100 140 50 90 0 40 - + + - - - - 200 100 % DNA 50 Bound 100 0 Prednisone (mg/d) ESR (mm/hr) 0 50 0 20 40 60 80 100 120 Pincus T et al. New Engl J Med. 1969;281:701-705. 140 160 180 Days Is it Better to Have 80% of the Information in 100% of Patients or 100% of the Information in 5% of Patients? Pincus T, Wolfe F. J Rheumatol. 2005;32:575-577. Activities of Daily Living (ADL) in Prognosis of Nonrheumatic Diseases • In congestive heart failure, ADL predicts 36-mo mortality as ejection fraction (Konstam. Am J Cardiol. 1996;78:890) • In AIDS, ADL predict 36-month mortality as CD4/CD8 ratios, clinical AIDS prognostic staging (CAPS), severity classification for AIDS hospitalizations (SCAH) (Justice. J Clin Epidemiol. 1996;49:193) • In hospitalized elderly patients, ADL predict one-year mortality beyond physiologic data and comorbidities (Covinsky. J Gen Intern Med. 1997;12:203) Requirements for clinic-based measurement tool Valid Reliable Feasible – easily completed by patient Clinically useful – amenable to simple review by MD prior to seeing patient Acceptable to MD and patient Amenable to charting on flow sheet Saves time for patient and health professional to focus on major concerns of the patient Recognize underappreciated disease severity and patient concerns Patient Questionnaires in Clinical Research vs Clinical Care Clinical research Selected patients Long, many pages Takes time for pt, staff Complex scoring No scoring at visit Results unknown at visit Send to data center Enter into computer Research agenda Clinical care All patients 1-page patient friendly,<10 min Saves time for MD “Eyeball” results Scoring templates for MD Adds to clinical care Review with patient Enter onto flowsheet document, improve care Quality improvement agenda Prediction of premature mortality according to blood pressure and cholesterol converted hypertension and hypercholesterolemia from optional treatments to major public health campaigns. Imagine doctors saying that they do not measure blood pressure or cholesterol because “it takes too much time” or “the staff will not cooperate,” as suggested for why they do not measure physical function. Should Contemporary Rheumatology Clinical Trials Be More Like Standard Patient Care and Vice Versa? Pincus T, Sokka T. Ann Rheum Dis. 2004;63(Suppl II):ii32-ii39. Should rheumatology health professionals keep track of their patients with Gestalt impressions or with quantitative data?