10,602 research outputs found

    The use of administrative health care databases to identify patients with Rheumatoid Arthritis

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    Objective: To validate and compare the decision rules to identify rheumatoid arthritis (RA) in administrative databases. Methods: A study was performed using administrative health care data from a population of 1 million people who had access to universal health care. Information was available on hospital discharge abstracts and physician billings. RA cases in health administrative databases were matched 1:4 by age and sex to randomly selected controls without inflammatory arthritis. Seven case definitions were applied to identify RA cases in the health administrative data, and their performance was compared with the diagnosis by a rheumatologist. The validation study was conducted on a sample of individuals with administrative data who received a rheumatologist consultation at the Arthritis Center of Nova Scotia. Results: We identified 535 RA cases and 2,140 non-RA, noninflammatory arthritis controls. Using the rheumatologist's diagnosis as the gold standard, the overall accuracy of the case definitions for RA cases varied between 68.9% and 82.9% with a kappa statistic between 0.26 and 0.53. The sensitivity and specificity varied from 20.7% to 94.8% and 62.5% to 98.5%, respectively. In a reference population of 1 million, the estimated annual number of incident cases of RA was between 176 and 1,610 and the annual number of prevalent cases was between 1,384 and 5,722. Conclusion: The accuracy of case definitions for the identification of RA cases from rheumatology clinics using administrative health care databases is variable when compared to a rheumatologist's assessment. This should be considered when comparing results across studies. This variability may also be used as an advantage in different study designs, depending on the relative importance of sensitivity and specificity for identifying the population of interest to the research question

    British pain clinic practitioners' recognition and use of the bio-psychosocial pain management model for patients when physical interventions are ineffective or inappropriate : results of a qualitative study

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    Background To explore how chronic musculoskeletal pain is managed in multidisciplinary pain clinics for patients for whom physical interventions are inappropriate or ineffective. Methods A qualitative study was undertaken using semi-structured interviews with twenty five members of the pain management team drawn from seven pain clinics and one pain management unit located across the UK. Results All clinics reported using a multidisciplinary bio-psychosocial model. However the chronic pain management strategy actually focussed on psychological approaches in preference to physical approaches. These approaches were utilised by all practitioners irrespective of their discipline. Consideration of social elements such as access to social support networks to support patients in managing their chronic pain was conspicuously absent from the approaches used. Conclusion Pain clinic practitioners readily embraced cognitive/behavioural based management strategies but relatively little consideration to the impact social factors played in managing chronic pain was reported. Consequently multidisciplinary pain clinics espousing a bio-psychosocial model of pain management may not be achieving their maximum potential

    Assessment of the Australian Rheumatology Association Database for national population health monitoring: working paper

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    This working paper uses the Australian Institute of Health and Welfare\u27s recently developed assessment framework to assess the suitability of the Australian Rheumatology Association Database as a potential new data source for population health monitoring of inflammatory arthritis. Summary A wide range of existing data sources could potentially be used to improve our understanding of arthritis in the Australian population. This working paper uses an assessment framework recently developed by the Australian Institute of Health and Welfare (AIHW) to assess the suitability of the Australian Rheumatology Association Database (ARAD) as a potential new data source for population health monitoring of inflammatory arthritis. More than 400,000 Australians have rheumatoid arthritis, the most common form of inflammatory arthritis. This auto-immune disease causes chronic inflammation, pain and swelling of the joints and can greatly reduce a person\u27s quality of life. The ARAD, managed by the Australian Rheumatology Association, is a national registry that collects health information from individuals with inflammatory arthritis. It was primarily established to monitor the benefits and safety of new treatments, particularly the biological disease-modifying anti-rheumatic drugs (bDMARDs). The AIHW\u27s assessment of the ARAD for the purpose of national population health monitoring is that: it has the potential to fill a range of identified data gaps in relation to key questions for monitoring arthritis, including treatment outcomes, disease progression, quality of life and economic impacts it has well established administrative and governance arrangements in place to ensure data quality and compliance with legislative requirements it has limited coverage which could potentially be improved by combining with, or linking to, other similar data sources on balance, it is a data source with the potential to provide useful information for population health monitoring of inflammatory arthritis, particularly if used in combination with, or linked to, other data sources

    The importance of early arthritis in patients with rheumatoid arthritis

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    Rheumatoid arthritis (RA) is a systemic inflammatory disorder that manifests predominantly in the synovial joint, where it causes a chronic inflammatory process, leading to early osteoarticular destructions. These destructions are progressive and irreversible, generating a significant functional deficiency. During the last years, the diagnostic approach of RA has focused on early arthritis. Early arthritis can develop into established RA or another established arthropathy, like systemic lupus erythematosus or psoriatic arthritis. It can have a spontaneous resolution or may remain undifferentiated for indefinite periods of time. The management of early arthritis has changed considerably in the past few years, under the influence of new concepts of diagnosis and new effective therapies. The treatment goal of early arthritis should now be the clinical remission and prevention of joint destruction. Methotrexate is the first line of therapy, used to treat early arthralgia and to reverse or limit impending exacerbation to RA. Biological treatment is used as a second line therapy in patients with severe disease who do not respond or have a contraindication to disease-modifying antirheumatic drugs (DMARDs). Patients with early arthritis should usually be identified and directed to rheumatologists to confirm the presence of arthritis, and to establish the correct diagnosis plus to initiate the proper treatment strategies

    The effectiveness of a multidisciplinary foot care program for children and adolescents with juvenile idiopathic arthritis: an exploratory trial

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    Objectives: To evaluate the effectiveness of multidisciplinary foot-care, and to evaluate the methodological considerations of a trial of multidisciplinary care in juvenile idiopathic arthritis. Design: Exploratory randomised controlled trial. Subjects/Patients: Children/adolescents with juvenile idiopathic arthritis and inflammatory joint disease affecting the foot/ankle. Methods: Standard medical care was compared with a 12 month program of multidisciplinary foot-care informed by musculoskeletal ultrasound. This program was centred on strict disease control through rigorous examination and interventions delivered by a team comprised of a paediatric rheumatologist, podiatrist, physiotherapist and musculoskeletal ultrasonographer. Patients were assessed on foot impairment and disability scores using the Juvenile Arthritis Foot Disability Index. Results: Forty-four participants, aged 3-17 years were randomly assigned to receive the experimental (n = 21) or usual care (n = 23) interventions. There was an overall improvement in levels of foot related impairments in both groups over 12 months. Between-group differences in change scores for the Juvenile Arthritis Foot Disability Index were not statistically significant at 6 or 12 month follow-ups. Conclusion: The integrated multidisciplinary foot care interventions described in this trial were safe, but did not improve foot impairment levels relative to usual care. This trial identified several methodological challenges including recruitment/retention, difficulties with outcome tools and potential confounders.</p

    The information needs of people living with ankylosing spondylitis: a questionnaire survey

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    &lt;p&gt;BACKGROUND:Today, health care is patient-centred with patients more involved in medical decision making and taking an active role in managing their disease. It is important that patients are appropriately informed about their condition and that their health care needs are met. We examine the information utilisation, sources and needs of people with ankylosing spondylitis (AS).&lt;/p&gt; &lt;p&gt;METHODS: Participants in an existing AS cohort study were asked to complete a postal or online questionnaire containing closed and open-ended questions, regarding their information access and needs. Participants were stratified by age and descriptive statistics were performed using STATA 11, while thematic analysis was performed on open-ended question narratives. Qualitative data was handled in Microsoft Access and explored for emerging themes and patterns of experiences.&lt;/p&gt; &lt;p&gt;RESULTS: Despite 73% of respondents having internet access, only 49% used the internet to access information regarding AS. Even then, this was only infrequently. Only 50% of respondents reported accessing written information about AS, which was obtained mainly in specialist clinics. Women were more likely than men to access information (63% (women) 46% (men)) regardless of the source, while younger patients were more likely to use online sources. The main source of non-written information was the rheumatologist. Overall, the respondents felt there was sufficient information available, but there was a perception that the tone was often too negative. The majority (95%) of people would like to receive a regular newsletter about AS, containing positive practical and local information. Suggestions were also made for more information about AS to be made available to non-specialist medical professionals and the general public.&lt;/p&gt; &lt;p&gt;CONCLUSIONS: There appears to be sufficient information available for people with AS in the UK and this is mostly accessed by younger AS patients. Many patients, particularly men, choose not to access AS information and concerns were raised about its negative tone. Patients still rely on written and verbal information from their specialists. Future initiatives should focus on the delivery of more positive information, targeting younger participants in particular and increasing the awareness in the general population and wider non-specialist medical community.&lt;/p&gt

    A nationwide survey on patient's versus physician's evaluation of biological therapy in rheumatoid arthritis in relation to disease activity and route of administration : the Be-Raise study

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    Objectives : Biological treatment of rheumatoid arthritis (RA) is one of the cornerstones of current treatment strategies for the disease. Surprisingly little information exists on whether the route of administration affects patients' treatment satisfaction. It is equally unclear whether rheumatologists are able to accurately perceive their patients' appreciation. Thus, the Belgian Beraise survey aimed to examine whether RA patient's experience of their current biological treatment coincided with the treating physician's perception. Methods : A nationwide cross-sectional survey was conducted by 67 Belgian rheumatologists providing data obtained from 550 RA patients. Patients under stable dose of biologics for at least 6 months, were enrolled consecutively and all completed questionnaires. Separate questionnaires were completed by the treating rheumatologist which evaluated their patient's perception of the route of treatment administration. This study therefore evaluates whether a treating physician perceives the satisfaction with the route of administration to the same degree as the patient. Results : Completed questionnaires were obtained from 293 and 257 patients who obtained treatment via the intravenous (IV) or subcutaneous (SC) route of administration, respectively. 58.4% of patients were in DAS28-CRP(3) remission. Patient satisfaction with disease control was higher (44% scored >= 9) than that of the treating physician (35%), regardless of the route of administration (p<0.01). No differences were seen for the patients treated with an IV as opposed to a SC route of administration. The physician's perception of patient's satisfaction with disease control was markedly lower for IV treated patients as opposed to SC treated patients (p<0.001). Conclusions : Patients' satisfaction with biological treatment is high, but there is a considerable mismatch between patients' and rheumatologists' appreciation on the route of administration of biological therapy in RA. Physicians consistently consider IV biological therapy to be less satisfactory. Patient's appreciation is largely dependent on disease control, irrespective of the route of administration. Therefore, and encouraging shared decision making, we suggest that physicians and patients discuss the route of administration of biologicals in an open way

    What Matters Most to Patients and Rheumatologists? A Discrete Choice Experiment in Rheumatoid Arthritis

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    Introduction: To determine patient and rheumatologist preferences for rheumatoid arthritis (RA) treatment attributes in Spain and to evaluate their attitude towards shared decision-making (SDM). Methods: Observational, descriptive, exploratory and cross-sectional study based on a discrete choice experiment (DCE). To identify the attributes and their levels, a literature review and two focus groups (patients [P] = 5; rheumatologists [R] = 4) were undertaken. Seven attributes with 2–4 levels were presented in eight scenarios. Attribute utility and relative importance (RI) were assessed using a conditional logit model. Patient preferences for SDM were assessed using an ad hoc questionnaire. Results: Ninety rheumatologists [52.2% women; mean years of experience 18.1 (SD: 9.0); seeing an average of 24.4 RA patients/week (SD: 15.3)] and 137 RA patients [mean age: 47.5 years (SD: 10.7); 84.0% women; mean time since diagnosis of RA: 14.2 years (SD: 11.8) and time in treatment: 13.2 years (SD: 11.2), mean HAQ score 1.2 (SD: 0.7)] participated in the study. In terms of RI, rheumatologists and RA patients viewed: time with optimal QoL: R: 23.41%/P: 35.05%; substantial symptom improvement: R: 13.15%/P: 3.62%; time to onset of treatment action: R: 16.24%/P: 13.56%; severe adverse events: R: 10.89%/P: 11.20%; mild adverse events: R: 4.16%/P: 0.91%; mode of administration: R: 25.23%/P: 25.00%; and added cost: R: 6.93%/P: 10.66%. Nearly 73% of RA patients were involved in treatment decision-making to a greater or lesser extent; however, 27.4% did not participate at all. Conclusion: Both for rheumatologists and patients, the top three decision-making drivers are time with optimal quality, treatment mode of administration and time to onset of action, although in different ranking order. Patients were willing to be more involved in the treatment decision-making process

    Arthritis and disability

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    Executive summary: Arthritis Australia commissioned the Social Policy Research Centre (SPRC) at UNSW Australia to carry out research on the lived experience of people with arthritis related conditions. This report outlines the methods, findings and implications of the research. Arthritis is the second leading cause of disability and the most common cause of chronic pain in Australia; it is the most prevalent long-term health condition, affecting 3 million people or about 15 per cent of the population. Studies are available on the health costs and loss of productivity associated with arthritis, but not as much is understood about the extent to which arthritis is associated with disability–who is affected, how people are affected, what helps people cope with their condition day to day, and how support services can be improved. Improving understanding of the disability impact of arthritis is particularly important given the transition in Australia to the National Disability Insurance Scheme and the impact this may have on service availability and delivery
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