530 research outputs found

    Exploring Rheumatoid Arthritis Patients' Needs in Shared Decision Making: A Qualitative User Needs Study

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    Background: Rheumatoid arthritis (RA) is a chronic inflammatory debilitating joint condition with individualized symptom severity. Access to multiple medication choices allow consideration of patient preferences and fit to their lifestyles. Shared decision making (SDM) is a recent approach in medicine where medical decisions are formed in combination of latest scientific evidence, patient’s lived experiences, and physician’s clinical expertise. SDM may be a fitting approach for RA due to the extended time allowed for developing patient-physician rapport, room to discuss patient preferences, and decisions to be revisited. Objective: To explore user needs and challenges to support RA patients in shared decision-making processes as it relates to chronic disease management, self-monitoring, and medication choices. Methods: Semi-structured interviews were conducted with RA patients (n=13) recruited from the Canadian Arthritis Patient Alliance. Thematic analysis was performed using NVivo software. Data was coded inductively and iterated on until no new themes emerged. Results: Three main themes emerged from interview data. (1) Gaps in Psychosocial Care: Relevant to short and long-term medication side effects, sexual health, mental health, and family planning were sensitive and stigmatized topics which were often dismissed at the rheumatologist’s visits. (2) Patient Agency: RA patients were exercising patient agency needed for SDM through proactively seeking knowledge about their disease; making personal judgements on medications based on their symptoms; and relying on their social support networks for tough decisions. (3) Adaptations: Over years of dealing with RA, patients reported adaptations, such as flexibility to psychological adaptations, improved general health through modifiable lifestyle factors, and several minor ergonomic changes for improved daily comfort. Conclusion: Designs in health technology to support RA patients with SDM may benefit by acknowledging the dynamic nature of RA as a chronic disease. Further socio-technologic developments can minimize the burden of living with RA

    The 2016 Academic Emergency Medicine Consensus Conference, Shared Decision Making in the Emergency Department: Development of a Policy-relevant Patient-centered Research Agenda Diagnostic Testing Breakout Session Report.

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    Diagnostic testing is an integral component of patient evaluation in the emergency department (ED). Emergency clinicians frequently use diagnostic testing to more confidently exclude worst-case diagnoses rather than to determine the most likely etiology for a presenting complaint. Increased utilization of diagnostic testing has not been associated with reductions in disease-related mortality but has led to increased overall healthcare costs and other unintended consequences (e.g., incidental findings requiring further workup, unnecessary exposure to ionizing radiation or potentially nephrotoxic contrast). Shared decision making (SDM) presents an opportunity for clinicians to discuss the benefits and harms associated with diagnostic testing with patients to more closely tailor testing to patient risk. This article introduces the challenges and opportunities associated with incorporating SDM into emergency care by summarizing the conclusions of the diagnostic testing group at the 2016 Academic Emergency Medicine Consensus Conference on SDM. Three primary domains emerged: 1) characteristics of a condition or test appropriate for SDM, 2) critical elements of and potential barriers to SDM discussions on diagnostic testing, and 3) financial aspects of SDM applied to diagnostic testing. The most critical research questions to improve engagement of patients in their acute care diagnostic decisions were determined by consensus

    Arthritis Care Res (Hoboken)

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    Objective:Health disparities in patient-reported outcomes (PROs) by income and education are well documented; the impact of health literacy on PROs has received less attention. We examined independent effects of income, education, and health literacy on PROs in SLE.Methods:Data from the California Lupus Epidemiology Study (CLUES, n=323) were used. Health literacy was assessed with a validated 3-item measure (ability to understand written information, reliance on others to understand written information, confidence in completing written forms). PROs were administered by interview in English, Spanish, Cantonese, or Mandarin. Generic and disease-specific PROs were examined: ten PROMIS short forms, the eight SF-36 subscales, and three patient-reported SLE disease activity and damage measures. We conducted two sets of multivariable analyses: the first examined education, income, or health literacy individually; the second included all three simultaneously. All multivariable models included age, sex, race/ethnicity, language, disease duration, and physician-assessed disease activity and damage.Results:Over one-third (38%) had limited health literacy (LHL), including >25% with greater than high school education. In multivariable analyses simultaneously considering education, income, and health literacy, LHL was associated with significantly worse scores on all PROs except disease damage. In contrast, disparities by income were seen in only three PROMIS scales, three SF-36 subscales, and one disease activity measure. No disparities by education level were noted.Conclusions:We found significantly worse PRO scores among individuals with LHL, even after controlling for disease activity and damage. Whether disparities are due to actual differences in health or measurement issues requires further study.U01 DP005120/DP/NCCDPHP CDC HHS/United StatesU01DP005120/ACL/ACL HHS/United StatesU01 DP005120/CC/CDC HHS/United States2022-01-01T00:00:00Z32741118PMC77752678874vault:3635

    A Prototype Web Platform to Facilitate Public Engagement with Medical Evidence about Rheumatoid Arthtritis Medications

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    The Independent Studies program closed in 2016. This thesis was one of 25 accepted by Library for long-term preservation and presentation in UWSpace.Contemporary technologies and user interface design enable people to routinely interact with data in their everyday lives. While consumer applications for shopping and travel often feature data-driven user interfaces, health resources rarely do. These resources rely on manual translation of medical evidence into prose instead of providing users the capacity to interact with underlying data. The abstraction away from details about treatment options, including data about efficacy, harms, and patient-reported outcomes, stands in the way of people who may wish to become fully informed when taking on important medical decisions. In spite of barriers that restrict access to and potential to apply medical evidence, this project explored whether contemporary open-source Web technologies could be adapted to create datadriven resources for the exploration of such evidence. A prototype platform and example applications were developed using JavaScri+I3pt and React.js, with Google Spreadsheets as a data store for medical evidence related about twelve disease-modifying antirheumatic drugs (DMARDs) commonly used to treat rheumatoid arthritis. Research findings were manually encoded from diverse sources, and a controlled vocabulary and data visualization components built to bridge the gap between outcomes and data publishing formats favored in research, and issues important to patients with rheumatoid arthritis. The volume and heterogeneity of source evidence revealed no straightforward parallel to consumer data-driven online applications, especially where evidence conflicts or is uncertain. Nevertheless, this thesis demonstrates that extant and ready-made technologies can be combined to create an extensible, data-driven platform and user interface elements to investigate and visualize certain kinds of evidence about chronic disease treatment options. Future research might investigate how such platforms might be incorporated into patient-facing decision aids, automated synthesis of research findings, and collaborative tools to encode evidence

    My joint pain, a web-based resource, effects on education and quality of care at 24 months

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    Objective: To evaluate the effects of the updated version of an evidence-based osteoarthritis (OA) resource and consumer hub, 'My Joint Pain' website, on health education and quality of care over 12 months.Methods: Using a classic quasi-experimental design, participants with symptomatic hip or knee OA were recruited across Australia to evaluate the 'My Joint Pain' website, compared to a control group of non-users from 12 to 24 months. Outcome measures included the Health Education Impact Questionnaire (HEIQ) and the OA Quality Indicator (OAQI) questionnaire. The changes from 12 to 24 months in the HEIQ were evaluated using a generalised linear model. The differences between users and non-users in the OAQI were evaluated using a chi-square test.Results: A total of 277 eligible participants with symptomatic hip or knee OA were recruited at baseline, and 122 participants completed the 24-month surveys (users: n = 35, non-users: n = 87). There was no significant difference between users and non-users for the HEIQ scores at 24 months after adjustments for age, sex and body mass index (BMI). Users had higher emotional distress scores than non-users in univariable analysis. When compared with non-users in the OAQI, users showed favourable changes in receiving information about "self-management" and "acetaminophen" and "non-steroidal anti-inflammatory drugs (NSAIDs)" from 12 to 24 months.Conclusion: The evaluation of the updated 'My Joint Pain' website didn't find significant improvements in terms of health education, but it may help delivering useful information about self-management and appropriate use of pharmacological treatments. More strategies are needed to facilitate the uptake of evidence-based self-management and education online resources for OA consumers

    The Development and Evaluation of a Psycho-education Booklet for Genetic Aortic Disorders

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    Introduction:Genetic aortic disorders (GA disorders) refer to a group of heritable conditions where the main artery of the heart, the aorta is affected. The commonality of GA disorders is the increased risk of serious cardiac complications such as an aortic tear or rupture. Affected individuals face multiple and complex medical and lifestyle challenges. Improving the individual’s understanding of the diagnosis, treatment, and associated impacts, is essential to facilitate coping, decision-making, and self-management. Evidence also show that patients who are more involved in the treatment of their chronic disease report improved health and psychological distress (Barlow et al., 2002). Currently available psycho-educational resources, however, are insufficient for those recently diagnosed with a GA disorder. The current thesis describes the development and evaluation of an evidence-based psycho-education booklet for patients recently diagnosed with a GA disorder Development:A patient psycho-educational booklet was developed based on a literature review, expert consultation, and guided by the National Health and Medical Research Council (NHMRC, 1999) recommendations. Evaluation:A mixed method design was implemented. Twenty individuals with a diagnosis of a GA disorder, mean age = 49 years, equal number of males and females, with varying stages of disease and treatment, were recruited to complete the patient evaluation questionnaire. A further seven individuals were recruited for patient group interviews. Nine clinicians with expertise in GA disorders completed the clinician evaluation questionnaire. Results: The overall findings of the evaluation indicated that the information booklet was very well-received by the patient group and was considered informative, easy to read, practical, and a highly valuable resource. Overall, the clinicians endorsed the booklet as an extremely useful information resource about GA disorders and associated topics and supported giving the booklet to patients at the time of diagnosis and approved its ongoing use in consultations. The majority of clinicians commended the content as suitably pitched for the intended audience, and the format as appropriate in length, booklet size, layout and graphics. Conclusion:This study aimed to develop and pilot evaluate a patient psycho-education booklet specifically for those recently diagnosed with a GA disorder. The evaluation showed that the booklet was considered very positively in its clarity, usefulness, and acceptability by the patients with a diagnosis of a GA disorder, and of usefulness, benefit, and acceptability by health professionals who provide medical support for patients with GA disorders. To our knowledge, this will be the first psycho-education booklet developed and evaluated for an Australian audience

    An exploration of the clinical practice of Rheumatology specialist nurses undertaking consultations with patients starting Methotrexate

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    Background Rheumatology nursing roles have evolved over the last 25 years to include educating patients prior to commencing drugs such as Methotrexate in consultations. The expansion of their role has not been supplemented by specific training in order to prepare them for this undertaking. Thus, this study was developed to explore how Rheumatology Specialist nurses gained knowledge about consulting with patients on Methotrexate, how they delivered information to patients, and to identify elements of their consultation for further development. Methods This was a mixed-methods practice based study undertaken in three phases. Training, confidence and knowledge were explored with a questionnaire, which constituted Phase I. Phase II explored the lived experiences of the nurses with semi-structured interviews. Phase III explored the interaction between the nurses and patients during a consultation which was video-recorded and analysed using qualitative and quantitative approaches, with the interaction scored against items in the Calgary Cambridge consultation model. Findings The results of the survey (n=97) and the semi-structured interviews findings (n=6) revealed significant variability in training received by Rheumatology Specialist nurses. Confidence took three to 12 months to develop and was related to experience, knowledge and training, with nurses expressing a clear desire for more training. Written information was used by all participants during consultations, usually in the form of the Methotrexate information booklet, which had some benefits, including allowing the nurses to structure their consultations, ensuring that all of the information in the booklet was given to patients. However, it also had the disadvantage of becoming the nurses’ agenda which dominated the consultation, leading to overloading the patients with information and restricting discussion and questions from the patients. Analysis of consultation videos (n=10) supported these findings, demonstrating that whilst all of the important information from the booklet was given, there was a lack of involvement during the consultation of the patient agenda such as ideas, concerns and expectations, with little checking by the nurses to ensure the patients understood the information given. The effect of limited time was apparent. Cues from patients were often ignored or missed which may have been as a result of perceived time pressures or lack of confidence in dealing with questions. The comparison of the nurses’ consultations with the Calgary Cambridge consultation model showed variations in the nurses’ scores. It also raised new observations such as in those consultations which scored higher, the nurses used more illustrative and fewer batonic gestures, whilst the patient did the opposite. Conclusions Whilst Rheumatology Specialist nurses are clearly doing many things well, the education of patients starting drugs such as Methotrexate could be improved by training aimed at improving consultation techniques with the adoption of a modified Calgary Cambridge model consultation technique. Such an approach would benefit from further research to identify whether it results in improving patients’ involvement in the consultation process. The findings from this thesis have led directly to the development of “Top Tips”, published online by Versus Arthritis, to guide nurses during their consultations when giving information to patients about Methotrexate. Further work will include writing a handbook that aims to give nurses more knowledge about how to conduct a consultation with patients based on the Calgary Cambridge consultation model
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