An infrastructure of patient questionnaires at each rheumatology visit: improving efficiency and documenting care.
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Biomedical subjects
Publications and source records attributed to T Pincus.
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The traditional "pyramid" or sequential approach to treatment of patients with rheumatoid arthritis involved use of a nonsteroidal anti-inflammatory drug for months to years while seeking to avoid use of second-line antirheumatic drugs until evidence of joint damage was seen. This approach led to short-term reduction of inflammation and a few remissions. However, long-term remissions were rare, and most patients experienced poor long-term outcomes, including joint destruction, severe functional declines, considerable economic losses, work disability, and premature mortality. At this time, a "preventive" strategy is evolving in which early aggressive treatment with disease-modifying antirheumatic drugs is used, seeking to minimize long-term joint damage. When residual inflammation remains after maximum doses of single agents, as is usually the case, combinations of disease-modifying antirheumatic drugs appear to be a reasonable consideration for many patients. Methotrexate is the most commonly used "anchor drug" in combination therapy. Evidence from randomized, controlled clinical trials and observational studies have indicated increased efficacy and acceptable (and often lower) toxicity for combinations of methotrexate plus cyclosporine, hydroxychloroquine, sulfasalazine, leflunomide, etanercept, and infliximab. Further studies lasting 5 years or more are needed to determine the long-term effectiveness, toxicities, and optimal clinical use of disease-modifying antirheumatic drug combinations. At this time, such combinations are taken by at least some patients under care of almost all rheumatologists, and it appears likely that they will be used increasingly in the coming decades.
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OBJECTIVE: To develop components of a multidimensional Health Assessment Questionnaire (MDHAQ) through the addition of new items in the "patient-friendly" HAQ format, including advanced activities of daily living (ADL), designed to overcome "floor effects" of the HAQ and modified HAQ (MHAQ) in which patients may report normal scores although they experience meaningful functional limitations, and psychological items, designed to screen efficiently for psychological distress in routine care. METHODS: The new MDHAQ items, as well as scales for pain, fatigue, helplessness, and global health status on a 2-page questionnaire, were completed by 688 consecutive patients with various rheumatic diseases, including 162 with rheumatoid arthritis (RA), 114 with fibromyalgia, 63 with osteoarthritis, 34 with systemic lupus erythematosus, 20 with vasculitis, 18 with psoriatic arthritis, 16 with scleroderma, and 261 with various other rheumatic diseases, over 2 years at a weekly academic rheumatology clinic. RESULTS: The new MDHAQ items have good test-retest reliability and face validity. MHAQ scores were highest in patients with RA, and scores for other scales were highest in patients with fibromyalgia. On the advanced ADL, 58% of patients reported difficulty with errands, 68% with climbing stairs, 79% with walking two miles, 87% with participating in sports and games, and 94% with running or jogging two miles. On the psychological items, 75% of patients reported difficulty with sleep, 63% with stress, 61% with anxiety, and 57% with depression. Normal MHAQ scores were reported by 23% of patients and normal HAQ scores by 16% of patients who completed these questionnaires, while fewer than 5% had normal scores on the MDHAQ. CONCLUSION: The MDHAQ items overcome in large part the "floor effects" seen on the HAQ and MHAQ, and are useful to screen for problems with sleep, stress, anxiety, and depression in the "patient-friendly" HAQ format. These data support the value of completion of a simple 2-page patient questionnaire by each patient at each visit to a rheumatologist.
The main aspects of the most common models describing depression in chronic pain patients are reviewed. It is suggested that dualistic thinking provides neither a satisfactory model of chronic pain, nor of depression, and relies on questionable assumptions of homogeneous, diagnostically defined entities. Models of depression based in cognitive psychology, although apparently more suitable, cannot be applied to populations of pain patients without clarifying the relationship between pain and depression. Furthermore, commonly used depression measurement instruments are criticized for criterion contamination, lack of external reference, and lack of sensitivity when applied to these groups, all of which further obscure the relationship. Finally, we suggest more promising directions for research in this area.
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Data from 27 girls of 10 to 12 years were obtained on the Fear Survey Schedule for Children--Revised and from their parents on the Fear Survey Schedule for Adults-III and the California F Scale. Analyses indicated fathers' authoritarianism scores and mothers' fear scores have independent associations with children's fears and suggested greater behavioural overcontrol by fathers and the greater propensity of mothers to communicate threatening information.
A proposed 4 page, 30-45 minute standard protocol to assess rheumatoid arthritis (SPERA) is described that includes all relevant measures of inflammatory activity such as joint swelling, measures of joint damage such as joint deformity, and outcomes such as joint replacement surgery, to monitor patients in longterm observational studies. Forms are included: (1) a patient self-report modified health assessment questionnaire (MHAQ) to assess function, pain, fatigue, psychological distress, symptoms, and drugs used; (2) assessor-completed forms: "RA clinical features" --criteria for RA, functional class, family history, extraarticular disease, comorbidities, joint surgery, radiographic score, and laboratory findings. (3) A 32 joint count with 5 variables: (a) a "shorthand" normal/abnormal so that normal joints require no further detailed assessment; (b) tenderness or pain on motion; (c) swelling; (d) limited motion or deformity; (e) previous surgeries; physical measures of function, i.e., grip strength, walk time, and button test. (4) Medication review of previous disease modifying antirheumatic drugs (DMARD), work history, and years of education. The forms allow cost effective acquisition of all relevant measures of activity, damage, and outcomes in routine clinical care, and allow recognition that measures of activity may show similar or improved values over 5-10 years, while measures of damage and outcomes indicate severe progression in the same patients. The SPERA is feasible to acquire most known relevant measures of activity, damage, and outcomes in RA in 30-45 min in usual clinical settings, to provide a complete database for analyses of longterm outcomes.
Observational and longitudinal observational studies (LOS) provide essential information about the course and outcome of rheumatic disorders that cannot be provided by randomized controlled trials, and they constitute the major clinical scientific communication in rheumatology. There has been no consensus as to the full and appropriate content of LOS. This report defines a core set of domains and reporting requirements for LOS. At the 1998 OMERACT IV Conference a consensus process evaluated the literature of rheumatology in light of the constructs, variables, and outcomes of rheumatology by using introductory lectures, nominal groups, and plenary sessions. The result of this process was to identify 5 "core" domains that should be included in every LOS: Health Status, Disease Process, Damage, Mortality, and Toxicity/Adverse Reactions. Two additional domains, Work Disability and Costs, were recognized as important, but need not be used in all LOS. Eleven subdomains were identified that divided the domains into convenient clinical and conceptual units. A set of reporting requirements was also determined. The core recommendations, which follow on the WHO ICIDH-2 outline, are not disease-specific; the substitution of different "disease process" and "damage" measures make them suitable for many rheumatic disorders. The core set is intended to serve as a core for LOS in almost all rheumatic conditions.
BACKGROUND: The American College of Rheumatology (ACR) established criteria to discriminate among patients with seven types of vasculitis. Although designated as "classification criteria" for research, these criteria are often used for diagnosis. OBJECTIVE: To examine the operating characteristics of the 1990 ACR classification criteria in the diagnosis of Wegener granulomatosis, giant-cell arteritis, polyarteritis nodosa, and hypersensitivity vasculitis. DESIGN: Prospective cohort study. SETTING: University medical center and Veterans Affairs medical center. PATIENTS: 198 consecutive patients referred to rheumatologists for evaluation of possible vasculitis. MEASUREMENTS: Blinded chart audits were done to classify patients according to the 1990 ACR classification criteria for Wegener granulomatosis, polyarteritis nodosa, giant-cell arteritis, and hypersensitivity vasculitis on the basis of the patients' initial presentation. Chart audits done 2 to 8 months after baseline provided the patients' final diagnoses, which were considered the gold standard, as in the development of the ACR criteria. Test operating characteristics of the ACR classification criteria were calculated according to 2 x 2 tables for the entire cohort and for only the patients with a final diagnosis of vasculitis. RESULTS: Vasculitis was diagnosed in 51 (26%) patients. Thirty-eight (75%) of 51 patients with vasculitis and 31 (21%) of 147 patients without vasculitis met ACR criteria for one or more types of vasculitis. The positive predictive values for the four vasculitides according to ACR criteria were 17% to 29% for the entire cohort and 29% to 75% for only the patients with a final diagnosis of vasculitis. CONCLUSION: The 1990 ACR classification criteria function poorly in the diagnosis of specific vasculitides.
Professional organizations advocate universal access to medical care as a primary approach to improving health in the population. Access to medical services is critical to outcomes of acute processes managed in an inpatient hospital, the setting of most medical education, research, and training, but seems to be limited in its capacity to affect outcomes of outpatient care, the setting of most medical activities. Persistent and widening disparities in health according to socioeconomic status provide evidence of limitations of access to care. First, job classification, a measure of socioeconomic status, was a better predictor of cardiovascular death than cholesterol level, blood pressure, and smoking combined in employed London civil servants with universal access to the National Health Service. Second, disparities in health according to socioeconomic status widened between 1970 and 1980 in the United Kingdom despite universal access (similar trends were seen in the United States). Third, in the United States, noncompletion of high school is a greater risk factor than biological factors for development of many diseases, an association that is explained only in part by age, ethnicity, sex, or smoking status. Fourth, level of formal education predicted cardiovascular mortality better than random assignment to active drug or placebo over 3 years in a clinical trial that provides optimal access to care. Increased recognition of limitations of universal access by physicians and their professional societies may enhance efforts to improve the health of the population.
OBJECTIVE: To collect the ratings of American rheumatologists regarding relative short-term and long-term effectiveness of disease-modifying antirheumatic drug (DMARD) therapy in the treatment of rheumatoid arthritis and to compare these data with results of a meta-analysis of randomized, controlled clinical trials (RCTs) of these drugs. METHODS: A survey was mailed to 3,200 United States rheumatologists who were members of the American College of Rheumatology during the summer of 1996. The survey was completed by 645 rheumatologists. RESULTS: Methotrexate (MTX) was rated as substantially more effective than any other DMARD after both 1 year and 4 years of therapy. At 1 year, more than 90% of rheumatologists rated MTX as "good or excellent," compared with 35% giving a similar rating to intramuscular (IM) gold, the second-ranked DMARD. At 4 years, MTX was rated as "good or excellent" by 65%, compared with 53% for combinations, 30% for prednisone, and 11% for hydroxychloroquine, the second-ranked single DMARD. These ratings reflect results of long-term observational studies, but differ considerably from a meta-analysis of results of short-term RCTs, in which the efficacy of MTX, sulfasalazine, penicillamine, and IM gold were indistinguishable. CONCLUSION: The ratings of US rheumatologists regarding effectiveness of DMARD therapies are in agreement with observational data, but differ substantially from results of RCTs. These findings suggest that observational studies may yield useful and important information about treatment results, which are complementary to, but not available from, the RCT model. Regulatory agencies should consider long-term observational studies as a part of the evaluation of drugs.
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OBJECTIVES: Two experiments investigating the presence of information-processing biases on tasks of attention (Stroop task) and memory (free recall) in relation to mood states in chronic pain patients are reported. The first investigates whether previously reported attentional bias is a function of pain status or mood state. The second describes a more detailed examination of the roles of anxiety and depression in processing biases in chronic pain patients. DESIGN AND METHOD: Both studies compared interference time on an emotional Stroop task between chronic pain patients and controls. Other measures included self-report of pain, depression and anxiety. RESULTS: Neither study found evidence for an attentional bias, although a memory recall bias was demonstrated. CONCLUSIONS: Interference in attending to emotionally salient stimuli appears to be related to measures of anxiety and depression rather than pain per se. When added to the findings of other investigators, these results suggest that the presence of attentional biases in chronic pain patients can best be accounted for as arising from mood state rather than pain-patient status.
OBJECTIVE: To analyze the time course of development of radiographic erosion, joint space narrowing, and malalignment in a longitudinal study of radiographs of the hands and wrists of 58 patients with rheumatoid arthritis (RA) taken over 18 years. METHODS: Among 210 consecutive patients in a reported cohort, 58 had at least one prior available radiograph 2-18 years earlier. A total of 141 hand and wrist radiographs in the 58 patients were scored for joint space narrowing, erosion, and malalignment in individual joints. RESULTS: Of the 58 patients studied, all developed joint space narrowing, 56 (96.5%) developed erosions, while only 24 (41.4%) developed malalignment. In radiographs of 22 patient studied within the first 5 years of disease, joint space narrowing was seen in 17 (77.3%), erosion in 16 (72.7%), and malalignment in only 3 (13.6%). Radiographic progression was seen in all 36 patients in whom the interval between radiographs was longer than 2 years. CONCLUSION: Joint space narrowing and erosion are seen in hand radiographs of most patients with RA seen in treatment centers within the first 5 years of disease. By contrast, malalignment develops in fewer patients, and generally only after 5 years of disease.