Education, self-care, and outcomes of rheumatic diseases: further challenges to the "biomedical model" paradigm.
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Biomedical subjects
Publications and source records attributed to L F Callahan.
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The recent literature on behavioral and social research in rheumatology covers the descriptive epidemiology of the behavioral, psychologic, and social impact of rheumatic diseases, the identification of risk factors and predictors of psychosocial outcomes, and cognitive and behavioral interventions used in the management of rheumatic disease. Past studies focused primarily on behavioral and social outcomes in rheumatoid arthritis and osteoarthritis. Recent work has continued to explore these issues in rheumatoid arthritis and osteoarthritis, but a number of studies are examining psychosocial impact and interventions in other rheumatic conditions, such as fibromyalgia and systemic sclerosis. The continued understanding of these consequences of rheumatic disease will enhance the quality of life in individuals who have these conditions.
OBJECTIVE: To characterize persons with self-reported arthritis and other rheumatic conditions who never saw a doctor for their condition. METHODS: Comparison of 2 groups (persons who did and did not see a doctor for arthritis) identified from cross sectional data from the 1989 National Health Interview Survey (NHIS), a stratified random probability sample representative of the US civilian noninstitutionalized population. Survey respondents aged 18 years and older who answered questions on musculoskeletal conditions and self-reported arthritis (n = 2944 unweighted; 36 million weighted) were asked when they last saw a doctor for this condition. RESULTS: Of adult Americans who reported arthritis, 16.4% reported never seeing a doctor for this problem. This group was more often male and younger than those who saw a doctor for arthritis. Persons were less likely to see a doctor for arthritis if they had better self-perceived health, fewer activity or work limitations due to arthritis, no health insurance, and if they were not overweight. Of those who reported never visiting a doctor for arthritis, 72.8% reported one or more doctor visits within the preceding 12 months. Weighted estimates indicate that nearly 6 million Americans with self-reported arthritis never see a doctor for their condition, including 191,000 with activity limitations due to arthritis. About 4.3 million of the 6 million people with arthritis reported at least one doctor visit within the previous 12 months. CONCLUSION: A "better" health profile and lack of health insurance may explain why some people do not see a doctor for arthritis. A substantial number, however, have both severe disease as well as health insurance that covers doctor visits for other medical problems. These visits represent missed opportunities for early diagnosis and effective medical and behavioral intervention.
OBJECTIVE: To compare 3 quantitative hand radiograph scores, Steinbrocker stage, Larsen score, and Sharp score modified by Kaye, to one another and to other measures of clinical status in a cross sectional analysis of hand radiographs of 173 patients with rheumatoid arthritis (RA). METHODS: Radiographs were scored and compared to other measures of clinical status according to correlation and cross tabulation analyses. RESULTS: In these cross sectional studies, radiographic scores according to all 3 methods were correlated at high levels (r(s) > 0.5) with one another and duration of disease, as well as with scores for physical joint deformity and limited motion; at lower levels (0.3 < r(s) < 0.5) with physical joint swelling scores, functional status, and age; and at low levels of marginal or no clinical importance (r(s) < 0.3) with physical joint tenderness scores, laboratory data, and pain scores. CONCLUSION: The 3 scoring methods give similar quantitative information concerning hand radiographs of patients with RA. The Larsen and modified Sharp scores are preferred measures, as the detailed information facilitates comparison of different patients and monitoring of individual patients over time.
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OBJECTIVE: To analyze scores on a scale designed to measure helplessness, a cognitive variable, as a possible mediator of the association between formal education level and mortality over 5 years in patients with rheumatoid arthritis (RA). METHODS: A cohort of 1,416 patients with RA from 15 private practices in 6 states and Washington, DC was monitored for over 5 years. Demographic, socioeconomic, therapy, functional status, and psychological variables were analyzed as possible predictors of mortality in invariable and multivariable Cox Proportional Hazards models. RESULTS: In a 5-year followup, 1,384 patients were accounted for (97.3%), including 174 who died versus 111 expected (standardized mortality ratio = 1.54). Higher mortality was associated significantly with low formal education, high age, poor scores for activities of daily living (ADL) on a modified health assessment questionnaire (MHAQ), and poor scores on a helplessness scale (all P < 0.01) in univariable analyses. High age, few years of formal education, and poor MHAQ ADL scores were all significant independent predictors of mortality when analyzed simultaneously in a Cox Proportional Hazards model. When helplessness scale scores were included in a model, scores greater than 2.4 (on a scale of 1 to 4), higher age, male gender, and increased MHAQ ADL difficulty scores were all independently significantly predictive of 5-year mortality (P < 0.05), while years of education was no longer a significant predictor. CONCLUSION: Scores on a helplessness scale appear to mediate a component of the association between formal education level and 5-year mortality in these patients with RA. Health professionals and policy makers might consider interventions directed at modification of helplessness as adjunctive to standard interventions to improve outcomes in RA.
OBJECTIVE: To provide an indication of the economic, social, and psychological impact of musculoskeletal conditions in the United States. METHODS: Review of the literature combined with estimates of data concerning health care utilization and acute and chronic disability due to musculoskeletal conditions, from the 1990-1992 National Health Interview Survey. RESULTS: The cost of musculoskeletal conditions was $149.4 billion in 1992, of which 48% was due to direct medical care costs and the remainder was due to indirect costs resulting from wage losses. This amount translates to approximately 2.5% of the Gross National Product, a sharp rise since the prior studies, even if part of the increase is an artifact of improved accounting methods. Each year, persons with musculoskeletal conditions make 315 million physician visits, have more than 8 million hospital admissions, and experience approximately 1.5 billion days of restricted activity. Approximately 42% of persons with musculoskeletal conditions--more than 17 million in all--are limited in their activities. CONCLUSION: The economic and social costs of musculoskeletal conditions are substantial. These conditions are responsible for a sizable amount of health care use and disability, and they significantly affect the psychological status of the individuals with the conditions as well as their families.
OBJECTIVE: To analyze Antonovsky's Sense of Coherence (SOC) Scale, in 828 patients with rheumatoid arthritis (RA) from 15 private rheumatology practices. This scale is designed to evaluate strengths within individuals that allow them to select appropriate strategies to deal with stressors; both the total 29-item (SOC-29) total scale and a 13-item (SOC-13) short form of the 29-item scale were analyzed. METHODS: Data were collected through mailed self-report questionnaires as a component of a long-term monitoring program. Internal consistency was evaluated according to Cronbach's alpha. Split-halves reliability was estimated according to the Spearman-Brown prophecy formula. Associations of the SOC-29 and the SOC-13 scale scores with demographic, clinical, and psychological variables were analyzed according to Pearson product moment correlations. RESULTS: Lower SOC-29 and SOC-13 scale scores were correlated significantly with higher scores for difficulty in performing activities of daily living (ADL), a visual analog pain scale score, global health status, and perceived learned helplessness. The levels of correlation for these variables suggest that each measure represents a construct that differs from the SOC. Lower scale scores were also correlated significantly with fewer years of formal education, adjusted for age, sex, and disease duration. CONCLUSIONS: The SOC-29 and SOC-13 scales are reliable and valid in patients with RA. The SOC scale explained in part variation in clinical status in patients with RA. The SOC-13 provides utility comparable to the SOC-29 in patients with RA.
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OBJECTIVE: To review mortality data in published studies of various rheumatic diseases. METHODS: A MEDLINE search of the literature on the rheumatic diseases, including osteoarthritis, rheumatoid arthritis, ankylosing spondylitis, systemic lupus erythematosus, scleroderma, polymyositis, and vasculitis. RESULTS: Mortality rates higher than expected have been reported in most rheumatic conditions, considerably higher for inflammatory rheumatic diseases. The mortality rates in patients with systemic lupus erythematosus, scleroderma, polymyositis, and vasculitis are often comparable to mortality rates seen in patients with neoplastic or cardiovascular diseases, although the causes of death often are not identified as the rheumatic disease. CONCLUSION: Mortality has been found to be predicted in most instances by more severe clinical status, and therefore death should not be considered as "unrelated" to the rheumatic disease. These observations may have important implications for clinical care and health policies regarding patients with rheumatic diseases.
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A system for data analysis is the end product of study planning, form design, data entry, data verification, and statistical analysis. This article reviews these steps and considers the fundamental choices in software for data entry and analysis. The appendix includes a listing of general and specialized software for data management and statistical analysis.
Quantitative studies of hand radiographs in patients with rheumatoid arthritis (RA) indicate that radiographic joint space narrowing and erosion are seen in more than 67% of patients within the 1st 2 years of disease, and progresses most rapidly during the 1st 5 years of disease, according to currently used scoring methods. Radiographic malalignment is rarely seen until after 5 years of disease. In cross sectional studies, correlations of radiographic scores with physical examination scores are minimally significant for joint tenderness, modestly significant for joint swelling, and highly significant for joint deformity and limited motion. In cross sectional studies, 3 quantitative methods, the Steinbrocker radiographic stage, modified Sharp method, and Larsen method, are highly significantly correlated and yield similar results in comparisons with other clinical measures.
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OBJECTIVE: To describe mortality over 15 years in a cohort of patients with rheumatoid arthritis, according to a simple questionnaire and joint count. DESIGN: A cohort study with 15 years of follow-up. SETTING: University hospital outpatient clinic. PATIENTS: A cohort of 75 patients with rheumatoid arthritis. MEASUREMENTS: Quantitative baseline measures: demographic, articular (joint counts), clinical, questionnaire, and physical measures, including modified questionnaire and joint count measures with substantially fewer items. RESULTS: Although few deaths were seen in the first 3 years after baseline, the standard mortality ratio over 15 years was 1.62, similar to findings in other series. Significant predictors of mortality included age, formal education level, joint count, activities-of-daily-living questionnaire scores, disease adjustment scores, morning stiffness, comorbid cardiovascular disease, grip strength, modified walking time, and button test. Five-year survival in patients with the poorest status according to these quantitative measures was 40% to 60%, comparable to expected survival at that time of patients with three-vessel coronary artery disease or with stage 4 Hodgkin disease. Simplified measures, including a count using only 28 joints and a questionnaire using only 8 activities of daily living, were similar to the more elaborate traditional measures for predicting mortality. CONCLUSION: Higher mortality rates in patients with rheumatoid arthritis are predicted by more severe clinical disease, as in other chronic diseases. Severe rheumatoid arthritis may be identified using quantitative functional status questionnaires and joint counts, which can be ascertained in about 10 to 15 minutes in any clinical setting.
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