Telemedicine in developing countries.
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Developing Countries↗
Biomedical subjects
S M Edworthy
Publications and source records attributed to S M Edworthy.
Structure of lifestyle disruptions in chronic disease: a confirmatory factor analysis of the Illness Intrusiveness Ratings Scale.
BACKGROUND: The Illness Intrusiveness Ratings Scale (IIRS) measures the extent to which disease or its treatment or both interfere with activities in important life domains. Before comparing IIRS scores within or across groups it is crucial to determine whether a common underlying factor structure exists across patient populations. OBJECTIVE: To investigate the factor structure underlying the IIRS and evaluate its stability across diagnoses. METHODS: IIRS responses from 5,671 respondents were pooled from 15 separate studies concerning quality of life in eight patient groups: rheumatoid arthritis; osteoarthritis; systemic lupus erythematosus; multiple sclerosis; end-stage renal disease (maintenance dialysis); renal transplantation; heart, liver, and lung transplantation; and insomnia. Data were gathered by different methods (eg, interview, self-administered, mail survey) and in diverse contexts (eg, individual vs. group). RESULTS: Exploratory maximum-likelihood factor analysis identified three underlying factors in a randomly selected subset of respondents (n = 400), corresponding to "Relationships and Personal Development," "Intimacy," and "Instrumental" life domains. Confirmatory factor analysis corroborated the stability of this structure in an independent subsample (n = 2100). Complementary goodness-of-fit indices confirmed the consistency of the three-factor solution, corroborating that IIRS scores are uniquely defined across patient populations. Coefficient alpha was high for total and subscale scores. CONCLUSIONS: IIRS scores can be compared meaningfully within and across patient groups. Both total and subscale scores can be used depending on research objectives.
Adult↗
Crawling through the Web: what do our patients find?
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Arthritis, Rheumatoid↗
How important is patient self-management?
This chapter addresses the issues associated with self-management in arthritis care. Alternative approaches to traditional medical care have gained popularity in the past decade. Some of the factors that have led to this are discussed in this chapter, including personal self-determination, the patient as consumer in a global economy, the backlash against medical technology, and fundamental questions about the medical model of care. Following this introduction, the goals of the Arthritis Self-Management and Bone-up on Arthritis Programs are outlined, along with the major theoretical underpinnings of both programmes. The impact of self-management programmes on the outcomes of disability, pain, depression and fatigue are reviewed, as are the potential implications for both the direct and indirect cost savings for a health system and society. The potential negative effects of self-management programmes are considered, and issues related to implementation, dissemination, quality control and long-term maintenance are reviewed. Finally, the value of self-management as a tool to be used effectively by the person with arthritis, in conjunction with his or her rheumatologist, is outlined. The relevance of well-established, valid and reliable self-management programmes is underscored by the growing number of people who seek help over the Internet. Without guidance, information can become harmful or distracting rather than helpful.
Arthritis↗
Illness intrusiveness explains race-related quality-of-life differences among women with systemic lupus erythematosus.
Our objective was to investigate whether quality of life in systemic lupus erythematosus (SLE) differs across ethnoracial groups and to identify factors that may explain race-related differences. Self-administered questionnaire data from 335 White, 40 Black, and 30 Asian women with SLE were obtained from a multi-center database. Measures assessed illness intrusiveness, psychological well-being, depressive symptoms, musculoskeletal pain, and learned helplessness. Extent of SLE disease activity was indexed by self-reported functional-system involvement. Educational attainment was indicated by number of years in school. Principal-components analysis reduced the four psychosocial measures to a single factor score. This represented psychosocial well-being In path analysis. Psychosocial well-being differed significantly across the three groups, with Whites reporting the highest, and Blacks the lowest, levels. Path analysis indicated that illness intrusiveness accounted for this race-related difference. Although disease activity was significantly associated with psychosocial well-being, it did not differ across ethnoracial groups. Illness intrusiveness and educational attainment emerged as independent mediators of the race-related difference in psychosocial well-being. We conclude that race-related quality-of-life differences exist among women with SLE and are mediated independently by illness intrusiveness and educational attainment.
Asia↗
World wide web: opportunities, challenges, and threats.
The Internet provides new opportunities to gather information on the population and may provide alternatives to the traditional methods of conducting clinical trials in systemic lupus erythematosus. The 'world wide web-www' has grown extensively in the past decade and it is estimated that there will be over 1 billion individuals on the net by the year 2005. Notifying, recruiting and assessing patients using Internet technology are already potential uses of this electronic medium. However, total reliance on the Internet could lead to biased sampling of patients with lupus. Women with low incomes or who are unemployed are less likely to have access to the Internet. Individuals with neurological deficits may have trouble using the Internet effectively. Data collected on the web may not have high reliability and much work needs to be completed to determine the psychometric properties of information derived from this source. One of the greatest threats to contend with is protecting the confidentiality of patient information when using electronic communication. Safeguards against inadvertent or unintended release of information must receive high priority in any attempt to use the Internet for clinical trials. Particular attention should be paid to email messages, which have the potential to be intercepted or sent to individuals without clearance to see patient information. Nevertheless, the costs to systems performance caused by security measures must also be considered and balanced against the need for access by those with appropriate authority. A number of websites already exist for the benefit of patients and providers. Clinicians and scientists interested in the field of lupus research will need to keep up to date on the rapidly proliferating information that is becoming available. This article lists sites which can be visited now.
Adolescent↗
Morning stiffness: sharpening an old saw?
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Age Factors↗
Improving medication adherence through patient education distinguishing between appropriate and inappropriate utilization. Patient Education Study Group.
OBJECTIVE: To evaluate the effectiveness of a computer assisted educational intervention to facilitate appropriate utilization of an antiinflammatory medication (Arthrotec) and investigate the mechanism by which it produces these effects. METHODS: A double blind, multicenter, randomized, controlled trial studied patients over age 50 years with hip or knee osteoarthritis (OA). All patients (n = 252) were treated with the medication (diclofenac + misoprostol). Patients randomized to the experimental group interacted with a computer program delivering information about their disease, the medication, its intended and side effects, appropriate utilization (distinguishing between appropriate versus inappropriate continuation and discontinuation of medication), patient involvement in treatment related decision making, and communication with service providers. In the control condition, another computer program presented generic information about OA. Data were collected at pre-test, post-test, and 8 week followup. RESULTS: Appropriate utilization of the medication occurred more frequently in the experimental than the control group (p<0.029). Compared to controls, the experimental group demonstrated significant improvements in knowledge, realistic expectations of drug benefits, perceived ease of adherence, and self-efficacy (all p<0.05). There was no difference between the groups with regard to illness intrusiveness, pain, or disability, but there was a greater improvement in stiffness in the experimental group (-0.63; 95% CI -0.81 to -0.45) compared to the control group (-0.39; 95% CI -0.53 to -0.25) at a level of p = 0.04. CONCLUSION: In conditions such as OA, where patient involvement in decision making is essential to the effectiveness of care, computer assisted education focussing on appropriate vs inappropriate continuation and discontinuation of medications has the potential to improve knowledge, increase self-efficacy, maintain realistic expectations, and facilitate adherence, resulting in more beneficial clinical outcomes.
Aged↗
A clinical study of the relationship between silicone breast implants and connective tissue disease.
OBJECTIVE: This study was a blinded, concurrent assessment of a historical cohort derived from a provincial registry (1978 to 1986) of breast implant recipients (cosmetic, not reconstructive) and controls (other cosmetic surgery) to test the hypothesis that connective tissue disease (CTD) is increased in breast implant recipients. METHODS: Women who underwent breast implant or other cosmetic surgery during the interval from 1978 to 1986 were contacted confidentially by Alberta Health and asked to participate in the study. Those willing to participate completed an extensive questionnaire and supplied a blood sample, subsequent to which all surgical records were reviewed to confirm implant type(s) or cosmetic surgery(ies). All participants with any suggestion of rheumatic disease were assessed blindly by a rheumatologist for CTD. RESULTS: One thousand five hundred seventy-six breast implant recipients were recruited, including 1112 who had received silicone gel-filled implants (> 13,500 person yrs exposure). Seven hundred twenty-six controls were recruited. Prevalence rates adjusted for sex and age for rheumatoid arthritis, systemic lupus erythematosus, scleroderma, and Sjögren's syndrome (the principal targeted conditions) were consistent with published reports for Caucasian women. While breast implant recipients self-reported significantly greater rates of symptoms than controls, post-surgical diagnoses of the principal targeted conditions did not indicate an increased incidence of typical or atypical CTD. CONCLUSION: The results of the study do not support the hypothesis that silicone gel-filled implants induce or promote CTD.
Adult↗
Aspects of use of antimalarials in systemic lupus erythematosus.
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Antimalarials↗
The influence of systemic lupus erythematosus on fetal development: cognitive, behavioral, and health trends.
In 1985, Gualtieri and Hicks proposed the immunoreactive theory to explain the higher prevalence of childhood neurodevelopmental disorders in males. The theory claimed that male fetuses are more antigenic to mothers, resulting in increased immunologic attack on the developing central nervous system, and increased probability of atypical brain development. Individuals with systemic lupus erythematosus (SLE) provide a unique situation in which to investigate this theory. We evaluated the parent-reported prevalence of five developmental problems (stuttering, other speech problems, hyperactivity, attention deficit, and reading problems) in two groups: 154 individuals ages 8-20 years born to women with SLE, drawn from six cities, and 154 controls of comparable age and sex whose mothers did not have SLE. Controls were drawn from a comparison group ascertained from randomly selected schools in one of the cities. Questions about handedness, immune disorders, and pregnancy and birth complications were also evaluated. Children of SLE mothers were shown to have more evidence of developmental difficulties, immune related disorders, and nonrighthandedness. For developmental problems, these findings were most marked in male children of SLE mothers. These results suggest that maternal immunoreactivity, as represented by women with SLE, may present a special risk factor for subsequent learning difficulties in their children, particularly males.
Adolescent↗
An exercise program in the treatment of fibromyalgia.
OBJECTIVE: To assess the utility of an exercise program, which included aerobic, flexibility and strengthening elements, in the treatment of fibromyalgia (FM). FM is a chronic musculoskeletal condition characterized by diffuse musculoskeletal pain and aching. It has been suggested that aerobic exercise is helpful in its treatment. METHODS: We studied 60 patients who met American College of Rheumatology criteria for FM and had no significant comorbidities. Measurements performed on each patient at the pre and poststudy assessment included the number of tender points (TP), total myalgic scores (TM), aerobic fitness (AF), flexibility and isokinetic strength. After initial evaluation patients were randomly assigned to either an exercise or a relaxation group. Each group met 3 times per week for 6 weeks for 1 h of supervised exercise or relaxation. All patients data were stored in a computerized database and statistical analysis was performed on all pre and poststudy assessments. RESULTS: Thirty-eight patients (18 exercise and 20 relaxation) completed the study. Analysis of our data showed no significant difference between the groups in their prestudy assessment. Poststudy assessments, however, showed a significant improvement between the exercise and relaxation groups in TP (p < 0.05), TM (p < 0.05), and AF (p < 0.05). Similar improvements were also found when the pre and poststudy assessment of the exercise group were compared. CONCLUSION: Exercise is helpful in the management of FM in the short term. It also shows that FM patients can undertake an exercise program which includes aerobic, flexibility, and strength training exercises without adverse effects. The long term utility of this type of exercise requires further evaluation.
Adult↗
The arthritis knowledge questionnaire. A test for measuring patient knowledge of arthritis and its self-management.
OBJECTIVE: To develop a questionnaire for measuring patients' knowledge about arthritis and its self-management. METHODS: An initial item pool of 175 multiple-choice questions was developed, based on the Stanford Arthritis Self-Management Program and on basic medical knowledge about arthritis and its management. A rheumatologist, psychologist, physiotherapist, and several lay individuals assessed the questions for content validity, breadth of coverage, and face validity. Patients assessed the questions for comprehensibility. Four subject groups with varying knowledge levels were recruited to answer the entire set of questions. Item analysis was undertaken to develop parallel forms of subtests so that repeated assessments could be undertaken. RESULTS: The final instrument, the Arthritis Knowledge Questionnaire, consists of 2 tests, each comprising 3 subtests: self-management (15 items), arthritis in general (15 items), and rheumatoid arthritis (11 items). CONCLUSION: We present psychometric evidence that these parallel forms provide highly reliable and valid estimates of knowledge concerning arthritis and arthritis self-management.
Arthritis↗
The safety and efficacy of low-dose tissue plasminogen activator in the treatment of systemic sclerosis.
The safety and efficacy of low-dose (10 mg) recombinant human tissue plasminogen activator (rhtPA: Activase: Genentech) was studied in 14 systemic sclerosis (SSc) patients. The patients were enrolled in a double blind, placebo-controlled crossover trial. Patients who met the inclusion criteria were enrolled in the study, given placebo or rhtPA, and then crossed over at 3 months. Assessment criteria included the Rodnan skin score; a daily patient diary to record side-effects, frequency, and severity of Raynaud's episodes and activity; and pulmonary function tests. Ten mg of rhtPA (Genentech) was administered over a 4 hour period using a myocardial infarction protocol. None of the patients experienced side-effects from the treatment protocol. No differences in the frequency or severity of Raynaud's episodes were noted during the two arms of the study. However, when the mean change of the Rodnan skin score in the placebo arm was compared to the rhtPA arm of the protocol, a significant difference was observed (0.8 vs. -5.4, p < 0.001). Three patients had moderate improvement and seven showed mild improvement. Mild deterioration or no change in study parameters was noted in 4 patients. This study has demonstrated that the administration of low-dose rhtPA is safe and is accompanied by modest improvement in symptoms of a subset of scleroderma patients.
Adult↗
A database for systemic lupus erythematosus and systemic connective tissue disorders.
Connective tissue diseases (CTDs) typically have a wide spectrum of symptoms that vary widely over time, often requiring a large array of medications and laboratory tests. This presents a challenge in all stages of database development, including the selection of data elements, collection methods, coding of variables, and selection of a relational database with the potential for tracking. There is a distinct need for valid, reliable data in a usable form to assist in the diagnosis, management, and research of CTDs. This article discusses the factors involved, provides examples of data collection tools that are presently used, and suggests how they might be employed by the physician in diagnosis and management of CTDs.
Connective Tissue Diseases↗
Comparison of amitriptyline, cyclobenzaprine, and placebo in the treatment of fibromyalgia. A randomized, double-blind clinical trial.
OBJECTIVE: To compare the relative efficacy and tolerability of amitriptyline, cyclobenzaprine, and placebo in the treatment of fibromyalgia, and to identify predictors of response to amitriptyline and cyclobenzaprine. METHODS: Two hundred eight patients who fulfilled the American College of Rheumatology criteria for the classification of fibromyalgia were entered into a 6-month prospective, double-blind, multicenter trial and were randomized to 1 of 3 treatment groups: amitriptyline, cyclobenzaprine, or placebo. RESULTS: After 1 month, 21%, 12%, and 0% of the amitriptyline, cyclobenzaprine, and placebo patients, respectively, had significant clinical improvement (amitriptyline versus placebo P = 0.002, cyclobenzaprine versus placebo P = 0.02, amitriptyline versus cyclobenzaprine P not significant). These percentages increased to 36%, 33%, and 19%, respectively, at the 6-month assessment (P not significant). The nature and frequency of side effects reported by patients treated with amitriptyline and those reported by patients treated with cyclobenzaprine were similar. A normal Minnesota Multiphasic Personality Inventory (MMPI) profile at baseline was predictive of clinical improvement at the 1-month evaluation (odds ratio 3.3, 95% confidence interval 1.2-9.0). However, neither the MMPI profile nor any of the demographic, clinical, or functional parameters evaluated at baseline predicted long-term response. CONCLUSION: Our data confirm the short-term efficacy of amitriptyline and cyclobenzaprine in a small percentage of patients with fibromyalgia. Long-term efficacy could not be demonstrated because of a higher-than-expected placebo response. Predictors of response to these drugs could not be determined.
Amitriptyline↗
Restless sleep, illness intrusiveness, and depressive symptoms in three chronic illness conditions: rheumatoid arthritis, end-stage renal disease, and multiple sclerosis.
Restless sleep was compared across 110 out-patients with rheumatoid arthritis (RA), 101 with end-stage renal disease (ESRD), 94 with multiple sclerosis (MS), and an unselected control group of 176 individuals attending their family practitioners (FP). It was also investigated in the three chronic illness groups as a contributor to illness intrusiveness--the extent to which one's illness and/or its treatment interfere with continued involvements in valued activities and interests--a determinant of depression and emotional distress in chronic conditions. Reported frequencies of restless sleep were highest in RA, lower in ESRD, and lowest in MS; FP patients reported frequencies that were similar, overall, to those observed in MS. These differences were evident among nondepressed, (chi 2 9, N = 309, p < 0.0001), but not depressed, individuals. The occurrence of restless sleep correlated significantly with increased illness intrusiveness, r (279) = 0.31, p < 0.001, in RA, ESRD, and MS. Results supported the hypothesis that the relation between restless sleep and emotional distress is mediated by illness intrusiveness. Treatment of restless sleep may offer the added benefit of diminishing illness intrusiveness and may, thereby, enhance quality of life in chronic physical illness.
Activities of Daily Living↗
Epitope mapping of histone 5 (H5) with systemic lupus erythematosus, procainamide-induced lupus and hydralazine-induced lupus sera.
To define the linear epitopes on H5 that react with systemic lupus erythematosus (SLE) and drug-induced lupus (DIL) sera, concurrent overlapping hexameric peptides corresponding to the sequence of H5 were synthesized by stepwise elongation of the polypeptide chains on polyethylene supports. The hexapeptides were tested for reactivity with 8 SLE and 8 DIL sera using an enzyme linked immunosorbent assay (ELISA). SLE and hydralazine-induced lupus (HIL) antibodies were most reactive with peptide 45 (SSRQSI) and patients with procainamide-induced lupus (PIL) were most reactive with peptide 24 (SHPTYS). The epitopes of highest reactivity were in the globular domain of H5. Low reactivity was observed with carboxyl terminal peptides. These findings differ from immunoblotting studies of protease cleaved peptides which have previously shown that the H5 determinants are in the carboxyl terminus.
Amino Acid Sequence↗