RSS 1.0Rheumatology
Recent Submissions
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Biologic dose reduction in rheumatoid arthritis: What stops us?Background: Biologic dose reduction (BDR) in patients with stable rheumatoid arthritis involves using smaller doses, extending the interval between doses or a mixture of both. For patients there is less exposure to long-term effects from biologics and fewer injections. For rheumatology departments and clinical commissioning groups (CCGs) there are significant cost savings to be had and this in turn may offer the opportunity to fund further service development. Success depends on CCGs and rheumatology units working together to resolve complex local clinical and practical issues. This exploratory study aimed to build greater understanding of organizational factors affecting implementation of BDR. Methods: Consultant rheumatologists (2), specialist pharmacists (2), specialist nurses (2) and commissioning medicines optimization leads (2) from two rheumatology units/CCGs were interviewed to explore their experiences with the local implementation process of BDR. The organizations selected had each successfully implemented a BDR pathway. The aim was to identify factors that facilitated BDR and any barriers to implementation.
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Case report: Klinefelter syndrome and autoimmunity syndrome and autoimmunityBackground: A 43 year old man presented to Rheumatology clinic following a referral from his GP regarding Raynaud’s phenomenon. The gentleman had a background of Klinefelter syndrome and paranoid schizophrenia. In addition he reported a history of mouth ulcers, some mouth dryness and chest tightness. His past medical history also included a pulmonary embolism and a DVT. His medications included testosterone supplementation and warfarin. Methods: On clinical examination he was a tall gentleman of youthful appearance, with gynaecomastia and sparse body hair. A few of his fingertips were blue and dusky with skin thickening from a healed digital ulcer, and his feet showed moderate acrocyanosis. Blood tests revealed positive ANA antibodies, with anti-Ro antibodies and weakly positive anti-La; with the following titres: SS-A/Ro antibodies >240 EliA kU/L and SS-B/La antibodies 24 EliA kU/L. He was also Lupus anticoagulants positive. His testosterone level had previously been 1.0 nmol/L. He was felt to have primary Sjögrens in the context of Klinefelter syndrome. His venous thromboemboli are likely due to a combination of low androgens and an underlying anti-phospholipid syndrome.
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Management of personalised guideline-driven care plans addressing the needs of multi-morbidity via clinical decision support servicesIntroduction: The clinical management of patients suffering from multiple chronic conditions is very complex, disconnected and time-consuming with the traditional care settings. C3-Cloud project aims to build an integrated care platform for addressing the growing demand for improved health outcomes of multimorbid and long-term care patients. Theory/Methods: C3-Cloud has established an ICT infrastructure enabling continuous coordination of patient-centred care activities by a multidisciplinary care team MDT and patients/informal care givers. The Coordinated Care and Cure Delivery Platform C3DP allows, collaborative creation and execution of personalised care plans for multi-morbid patients through systematic and semi-automatic reconciliation of clinical guidelines. Clinical decision support CDS systems implementing flowcharts from evidence based clinical guidelines are integrated to present suggestions for treatment goal and activities e.g. medications, follow-up appointments, diet, exercise, lab tests. Pilot site local care systems are integrated with the C3DP via the technical and semantic interoperability platform to facilitate informed decision making. Active patient involvement is realized through a Patient Empowerment Platform presenting personalized care plan to the patient and establishing a continuous bi-way communication with the patient to collect patient observations, questionnaire responses, symptoms and feedback about care plan goals and activities. Results: The following research results have been achieved to enable guideline enabled personalised care plan management for addressing the needs of multi-morbidity: 43 logical flowcharts were designed out of 4 disease guidelines Type 2 Diabetes, Heart Failure, Renal Failure and Depression. 181 CDS rules assessing 166 patient criteria and recommending 154 goal/activity suggestions were implemented as CDS services in GDL covering T2D and RF. 52 reconciliation rules were designed for eliminating contradicting guideline recommendations due to multi-morbidity. 23 HL7 FHIR profiles were defined for representing care plan and patient data. C3DP has been integrated with these CDS services via CDS-Hooks specification to recommend personalised care plan goals and activities. Discussions: In this research, we have successfully implemented an ICT infrastructure enabling guideline-driven integrated care for multi-morbid patients. Although our ICT solution covers all the technical requirements identified by clinical partners, effective implementation of integrated care in real-life care setting requires major changes in organisational responsibilities and care pathways. Conclusions: User-centred design and usability testing have successfully been completed. C3-Cloud pilot application will now be operated in 3 European pilot sites with the participation of 62 MDT members and 1200 multi-morbid patients for 15 months. Lessons learned: There are two main research lines for reconciliation of contradicting guideline recommendations: 1 fully-automated reconciliation via ontology reasoning, 2 manually-crafted reconciliation rules by clinical expert groups. Although first approach is more dynamic, research results are still for very primitive cases and not clinically validated. As we are targeting an industry-ready solution after piloting in real-life settings, we have opted for the second option. Limitations: When a new chronic disease is to be addressed within our platform, reconciliation rules covering all disease combinations have to be re-assessed by the clinical expert group. Suggestions for future research: Fully-automated reconciliation approaches need to be further studied and validated in real-life settings.
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COVID-19 associated aortitisA case report of an adult male presenting with an inflammatory aortitis associated with COVID-19 infection.
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Prolonged Zika virus RNA detection in semen of immunosuppressed patientZika virus RNA has been detected in semen samples collected <370 days after symptom onset. We report unusual persistence of Zika virus RNA in semen, confirmed by sequencing at 515 days after symptom onset and detectable for >900 days, in a patient with immunosuppression. Keywords: United Kingdom; Zika virus; clearance; immunosuppression; persistence; semen; viruses.
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Postgraduate medical education quality metrics panels can be enhanced by including learner outcomesPostgraduate medical education (PME) quality assurance at Health Education England (HEE) currently relies upon survey data. As no one metric can reflect all aspects of training, and each has its limitations, additional metrics should be explored. At HEE (West Midlands), we explored the use of learner outcomes, speciality examination pass rates and Annual Review of Competence Progression (ARCP) outcomes, as quality metrics. Feedback received from our local Quality Forum of 40 senior educators frames the discussion through this paper. Overall, learner outcomes are useful quality metrics that add to survey data to provide a more comprehensive picture of PME quality. However, the utility of ARCP outcomes as quality metrics is currently limited by concerns regarding variations in ARCP practice between regions. To address these concerns, ARCPs need the same processes, rigour, scrutiny and investment as other high-stakes assessments. This will improve the reliability and validity of the ARCP as an assessment and improve the usefulness of ARCP outcomes as quality metrics. Research is required to determine the optimal combination of metrics to use in PME quality assurance and to appraise the validity and reliability of the ARCP as an assessment.
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'Lost time'. Patients with early inflammatory/rheumatoid arthritis and their experiences of delays in Primary CareBackground: Early referral forms a crucial part in early inflammatory/rheumatoid arthritis (EI/RA) recovery. Delayed decisions to refer can lead to severe incapacity and emotional distress for individuals and family and feelings of lost time. How patients with EI/RA experience early referral decisions in Primary Care is an under explored area and warrants further investigation. Aim: To explore how patients newly diagnosed with EI/RA experienced their early contacts with Primary Care as they negotiated their journey through the referral process into secondary care. Design and setting: Qualitative face-to-face interviews with newly diagnosed EI/RA patients. Methods: In-depth semi-structured interviews were conducted to explore patients' experiences of referral from first symptoms to General Practitioner referral. All participants were interviewed within 2 weeks of being diagnosed in Secondary Care. Data analysis was conducted using interpretative phenomenological analysis. Findings: All participants in this study described having experienced struggles with their navigation through Primary Care towards diagnosis and specialist EI/RA services. This struggle comprised five key elements: 'family persuasion', 'lack of continuity in care', 'pushing for referral', 'strained relations' and 'lost time'. Conclusion: The delays experienced by patients when attempting to reach an early referral decision in Primary Care cause frustration for those presenting with EI/RA, partly because they do not feel heard. There is a significant impact on patients and their families when referral to specialist care is delayed.
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An integrated care platform system (C3-Cloud) for care planning, decision support, and empowerment of patients with multimorbidity: protocol for a technology trialBackground: There is an increasing need to organize the care around the patient and not the disease, while considering the complex realities of multiple physical and psychosocial conditions, and polypharmacy. Integrated patient-centered care delivery platforms have been developed for both patients and clinicians. These platforms could provide a promising way to achieve a collaborative environment that improves the provision of integrated care for patients via enhanced information and communication technology solutions for semiautomated clinical decision support. Objective: The Collaborative Care and Cure Cloud project (C3-Cloud) has developed 2 collaborative computer platforms for patients and members of the multidisciplinary team (MDT) and deployed these in 3 different European settings. The objective of this study is to pilot test the platforms and evaluate their impact on patients with 2 or more chronic conditions (diabetes mellitus type 2, heart failure, kidney failure, depression), their informal caregivers, health care professionals, and, to some extent, health care systems. Methods: This paper describes the protocol for conducting an evaluation of user experience, acceptability, and usefulness of the platforms. For this, 2 "testing and evaluation" phases have been defined, involving multiple qualitative methods (focus groups and surveys) and advanced impact modeling (predictive modeling and cost-benefit analysis). Patients and health care professionals were identified and recruited from 3 partnering regions in Spain, Sweden, and the United Kingdom via electronic health record screening. Results: The technology trial in this 4-year funded project (2016-2020) concluded in April 2020. The pilot technology trial for evaluation phases 3 and 4 was launched in November 2019 and carried out until April 2020. Data collection for these phases is completed with promising results on platform acceptance and socioeconomic impact. We believe that the phased, iterative approach taken is useful as it involves relevant stakeholders at crucial stages in the platform development and allows for a sound user acceptance assessment of the final product. Conclusions: Patients with multiple chronic conditions often experience shortcomings in the care they receive. It is hoped that personalized care plan platforms for patients and collaboration platforms for members of MDTs can help tackle the specific challenges of clinical guideline reconciliation for patients with multimorbidity and improve the management of polypharmacy. The initial evaluative phases have indicated promising results of platform usability. Results of phases 3 and 4 were methodologically useful, yet limited due to the COVID-19 pandemic.
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Executive Summary: British Society for Rheumatology guideline on prescribing drugs in pregnancy and breastfeeding: immunomodulatory anti-rheumatic drugs and corticosteroidsAn Executive Summary of the British Society for Rheumatology guideline on prescribing drugs in pregnancy and breastfeeding: immunomodulatory anti-rheumatic drugs and corticosteroids
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British Society for Rheumatology guideline on prescribing drugs in pregnancy and breastfeeding: immunomodulatory anti-rheumatic drugs and corticosteroidsBritish Society for Rheumatology guideline on prescribing drugs in pregnancy and breastfeeding: immunomodulatory anti-rheumatic drugs and corticosteroids
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British Society for Rheumatology guideline on prescribing drugs in pregnancy and breastfeeding: comorbidity medications used in rheumatology practiceBritish Society for Rheumatology guideline on prescribing drugs in pregnancy and breastfeeding: comorbidity medications used in rheumatology practice
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Executive Summary: British Society for Rheumatology guideline on prescribing drugs in pregnancy and breastfeeding: comorbidity medications used in rheumatology practiceExecutive Summary of the British Society for Rheumatology guideline on prescribing drugs in pregnancy and breastfeeding: comorbidity medications used in rheumatology practice
