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OBJECTIVES: We aimed to estimate what proportion of people with SLE attending UK rheumatology clinics would be categorized as being at high risk from coronavirus disease 2019 (COVID-19) and therefore asked to shield, and explore what implications this has for rheumatology clinical practice. METHODS: We used data from the British Society for Rheumatology multicentre audit of SLE, which included a large, representative cross-sectional sample of patients attending UK Rheumatology clinics with SLE. We calculated who would receive shielding advice using the British Society for Rheumatology's risk stratification guidance and accompanying scoring grid, and assessed whether ethnicity and history of nephritis were over-represented in the shielding group. RESULTS: The audit included 1003 patients from 51 centres across all 4 nations of the UK. Overall 344 (34.3%) patients had a shielding score ≥3 and would have been advised to shield. People with previous or current LN were 2.6 (1.9-3.4) times more likely to be in the shielding group than people with no previous LN (P < 0.001). Ethnicity was not evenly distributed between the groups (chi-squared P < 0.001). Compared with White people, people of Black ethnicity were 1.9 (1.3-2.8) and Asian 1.9 (1.3-2.7) times more likely to be in the shielding group. Increased risk persisted after controlling for LN. CONCLUSION: Our study demonstrates the large number of people with SLE who are likely to be shielding. Implications for clinical practice include considering communication across language and cultural differences, and ways to conduct renal assessment including urinalysis, during telephone and video consultations for patients who are shielding.
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COVID-19/prevención & control , Lupus Eritematoso Sistémico/terapia , Aceptación de la Atención de Salud/estadística & datos numéricos , Pautas de la Práctica en Medicina/estadística & datos numéricos , Cuarentena/estadística & datos numéricos , Reumatología/estadística & datos numéricos , Adulto , Estudios Transversales , Femenino , Humanos , Lupus Eritematoso Sistémico/virología , Nefritis Lúpica/terapia , Nefritis Lúpica/virología , Masculino , Auditoría Médica , Persona de Mediana Edad , Análisis de Regresión , SARS-CoV-2 , Telemedicina/estadística & datos numéricos , Reino Unido/epidemiologíaRESUMEN
OBJECTIVES: To assess the baseline care provided to patients with SLE attending UK Rheumatology units, audited against standards derived from the recently published BSR guideline for the management of adults with SLE, the NICE technology appraisal for belimumab, and NHS England's clinical commissioning policy for rituximab. METHODS: SLE cases attending outpatient clinics during any 4-week period between February and June 2018 were retrospectively audited to assess care at the preceding visit. The effect of clinical environment (general vs dedicated CTD/vasculitis clinic and specialized vs non-specialized centre) were tested. Bonferroni's correction was applied to the significance level. RESULTS: Fifty-one units participated. We audited 1021 episodes of care in 1003 patients (median age 48 years, 74% diagnosed >5 years ago). Despite this disease duration, 286 (28.5%) patients had active disease. Overall in 497 (49%) clinic visits, it was recorded that the patient was receiving prednisolone, including in 28.5% of visits where disease was assessed as inactive. Low documented compliance (<60% clinic visits) was identified for audit standards relating to formal disease-activity assessment, reduction of drug-related toxicity and protection against comorbidities and damage. Compared with general clinics, dedicated clinics had higher compliance with standards for appropriate urine protein quantification (85.1% vs 78.1%, P ≤ 0.001). Specialized centres had higher compliance with BILAG Biologics Register recruitment (89.4% vs 44.4%, P ≤ 0.001) and blood pressure recording (95.3% vs 84.1%). CONCLUSIONS: This audit highlights significant unmet need for better disease control and reduction in corticosteroid toxicity and is an opportunity to improve compliance with national guidelines. Higher performance with nephritis screening in dedicated clinics supports wider adoption of this service-delivery model.
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Adhesión a Directriz/estadística & datos numéricos , Lupus Eritematoso Sistémico/terapia , Guías de Práctica Clínica como Asunto , Adolescente , Adulto , Anciano , Anciano de 80 o más Años , Antirreumáticos/uso terapéutico , Femenino , Humanos , Lupus Eritematoso Sistémico/diagnóstico , Lupus Eritematoso Sistémico/tratamiento farmacológico , Masculino , Auditoría Médica , Persona de Mediana Edad , Calidad de la Atención de Salud/normas , Calidad de la Atención de Salud/estadística & datos numéricos , Estudios Retrospectivos , Reino Unido , Adulto JovenRESUMEN
OBJECTIVES: To establish the acceptability and feasibility of collecting daily patient-generated health data (PGHD) using smartphones and integrating PGHD into the electronic health record, using the example of RA. METHODS: The Remote Monitoring of RA smartphone app was co-designed with patients, clinicians and researchers using qualitative semi-structured interviews and focus groups, including selection of question sets for symptoms and disease impact. PGHD were integrated into the electronic health record of one hospital and available in graphical form during consultations. Acceptability and feasibility were assessed with 20 RA patients and two clinicians over 3 months. A qualitative evaluation included semi-structured interviews with patients and clinicians before and after using the app, and audio-recordings of consultations to explore impact on the consultation. PGHD completeness was summarized descriptively, and qualitative data were analysed thematically. RESULTS: Patients submitted data on a median of 91% days over 3 months. Qualitative analysis generated three themes: RA as an invisible disease; providing the bigger picture of RA; and enabling person-centred consultations. The themes demonstrated that the system helped render patients' RA more visible by providing the 'bigger picture', identifying real-time changes in disease activity and capturing symptoms that would otherwise have been missed. Graphical summaries during consultations enabled a more person-centred approach whereby patients felt better able to participate in consultations and treatment plans. CONCLUSION: Remote Monitoring of RA has uniquely integrated daily PGHD from smartphones into the electronic health record. It has delivered proof-of-concept that such integrated remote monitoring systems are feasible and can transform consultations for clinician and patient benefit.
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Recolección de Datos , Registros Electrónicos de Salud , Aplicaciones Móviles , Reumatología , Teléfono Inteligente , Estudios de Factibilidad , Grupos Focales , HumanosRESUMEN
BACKGROUND: There is interest internationally in improving the uptake of research evidence to inform health care quality and safety. This article focusses on guidance development from research studies as one method for improving research uptake. While we recognise that implementation strategies on the ´demand´ side for encouraging the uptake of research are important, e.g. knowledge brokers and university-practice collaborations, this article focusses on the ´production´ aspect of how guidance development is reported and the consequent influence this may have on end-users´ receptivity to evidence, in addition to other demand-side processes. MAIN TEXT: The article considers the following question: how is guidance developed and what are the implications for reporting? We address this question by reviewing examples of guidance development reporting from applied health research studies, then describe how we produced guidance for a national study of evidence use in decision-making on adopting innovations. The starting point for reflecting on our experiences is a vignette of the guidance ´launch´ event at a national conference. CONCLUSIONS: Implications for reporting guidance development and supporting improvement are discussed. These include the need to (a) produce reporting standards for the production of guidance to match reporting standards for other research methods, (b) acknowledge the ´informal´ or emergent aspects of producing guidance and its role within a wider knowledge mobilization strategy, (c) consider guidance development from projects as part of a wider knowledge mobilization strategy, and (d) encourage a receptive environment for guidance development and use, including researcher training, durable funding to support impact, and closer relations between research and practice.
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Atención a la Salud/organización & administración , Guías de Práctica Clínica como Asunto , Mejoramiento de la Calidad/organización & administración , Investigación Biomédica Traslacional , HumanosRESUMEN
OBJECTIVES: The evidence base for treatment of the idiopathic inflammatory myopathies is extremely limited. The rarity and heterogeneity of these diseases has hampered the development of good quality clinical trials and while a range of immunomodulatory treatments are commonly used in clinical practice, as yet there are no clear guidelines directing their use. We aimed to establish current prescribing regimens used to treat adults with myositis internationally. METHODS: An electronic survey based on different clinical scenarios was distributed internationally to clinicians involved in the treatment of patients with myositis. Participants were asked to select their first-line treatment preferences in each situation. A multinomial regression analysis was used to assess the influence of clinical scenario, respondent expertise and country of origin on first-line treatment choice. RESULTS: 107 survey responses were received. 57% of respondents considered themselves an expert in myositis and the majority of respondents were rheumatologists although responses from other specialities were also received. Pharmacological treatment with steroids and additional immunotherapy was the preference in most scenarios. First-line immunosuppressant choice was significantly influenced by the clinical scenario, the expertise of the treating physician and country of practice. Azathioprine, methotrexate and mycophenolate mofetil were the most commonly chosen agents. CONCLUSIONS: In the absence of available evidence, clinical experience and expert consensus often forms the basis of treatment guidelines. These results suggest that an international consensus approach would be possible in myositis and would overcome an urgent, yet unmet need for patients suffering with this difficult disease.
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Inmunosupresores/uso terapéutico , Miositis/tratamiento farmacológico , Pautas de la Práctica en Medicina/tendencias , Reumatólogos/tendencias , Reumatología/tendencias , Actitud del Personal de Salud , Consenso , Prescripciones de Medicamentos , Encuestas de Atención de la Salud , Conocimientos, Actitudes y Práctica en Salud , Humanos , Inmunosupresores/efectos adversos , Miositis/diagnóstico , Fenotipo , Pautas de la Práctica en Medicina/normas , Reumatólogos/psicología , Reumatólogos/normas , Reumatología/normasAsunto(s)
Infecciones por Coronavirus , Pandemias , Neumonía Viral , Betacoronavirus , COVID-19 , Humanos , SARS-CoV-2RESUMEN
Objective: This paper describes the co-production of a training video to support people with RA to self-examine for tender and swollen joints. Methods: The patient and public involvement and engagement (PPIE) group supporting a remote monitoring study elected to develop a video to train people with RA how to self-examine for tender and swollen joints, because nothing appropriate was publicly available to fulfil their needs. A core team of PPIE group members and clinicians developed the video, with input from conception to dissemination from the PPIE group. The video was posted, open access, on a YouTube website in February 2021, alongside supporting materials. The number of monthly hits was tracked and a survey developed to ascertain feedback. Results: The video received 1000 hits in the first week, and >40â000 at 10 months. The top three countries viewing the video were India, the USA and the UK, with a range of ages and gender profile broadly corresponding to those of RA patients. Forty-eight survey responses were received (26 patients and 22 clinicians). Patients reported an improvement in their ability to self-examine after watching this video. Eighty-six per cent of patients and 71% of clinicians would recommend the video. It has been used and disseminated by a number of national organizations within the UK. Conclusion: This co-produced, open-access training video for people with RA, originally intended to support a research study into remote monitoring, has been well received, reflecting an international interest in self-examination.
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BACKGROUND: Getting knowledge from healthcare research into practice (knowledge mobilisation) remains a global challenge. One way in which researchers may attempt to do this is to develop products (such as toolkits, actionable tools, dashboards, guidance, audit tools, protocols and clinical decision aids) in addition to journal papers. Despite their increasing ubiquity, the development of such products remains under-explored in the academic literature. This study aimed to further this understanding by exploring the development of products from healthcare research and how the process of their development might influence their potential application. METHODS: This study compared the data generated from a prospective, longitudinal, comparative case study of four research projects which aimed to develop products from healthcare research. Qualitative methods included thematic analysis of data generated from semi-structured interviews (38), meeting observations (83 h) and project documents (300+). Cases were studied for an average of 11.5 months (range 8-19 months). RESULTS: Case comparison resulted in the identification of three main themes with the potential to affect the use of products in practice. First, aspects of the product, including the perceived need for the specific product being identified, the clarity of product aim and clarity and range of end-users. Second, aspects of development, whereby different types of stakeholder engagement appear to influence potential product application, which either needs to be 'meaningful', or delivered through the implicit understanding of users' needs by the developing team. The third, overarching theme, relates to the academic context in which products are developed, highlighting how the academic context perpetuates the development of products, which may not always be useful in practice. CONCLUSIONS: This study showed that aspects of products from healthcare research (need/aim/end-user) and aspects of their development (stakeholder engagement/implicit understanding of end-users) influence their potential application. It explored the motivation for product development and identifies the influence of the current academic context on product development. It shows that there is a tension between ideal 'systems approaches' to knowledge mobilisation and 'linear approaches', which appear to be more pervasive in practice currently. The development of fewer, high-quality products which fulfil the needs of specified end-users might act to counter the current cynicism felt by many stakeholders in regard to products from healthcare research.
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OBJECTIVE: Utilizing patient-generated health data (PGHD) in clinical consultations and informing clinical and shared decision-making processes has the potential to improve clinical practice but has proven challenging to implement. Looking at consultations between people with rheumatoid arthritis (RA) and rheumatologists, this study examines when and how daily PGHD was discussed in outpatient consultations. METHODS: We conducted a secondary qualitative analysis of 17 audio-recorded research outpatient consultations using thematic and interactional approaches. RESULTS: Clinicians decided when to look at the PGHD and what symptoms to prioritise during the consultation. When PGHD was introduced early in consultations, it was usually used to invite patients to collaborate (elicit new information). When introduced later, PGHD was used to corroborate patient accounts and to convince the patient about proposed actions and treatments. Clinicians occasionally disregarded PGHD if it did not fit into their clinical assessment. CONCLUSION: The time that PGHD is introduced may influence how PGHD is used in consultations. Further research is needed to understand how best to empower patients to discuss PGHD. PRACTICE IMPLICATIONS: Educating patients and clinicians about the importance of timing and strategies when using PGHD in consultations may help promote shared decision-making.
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Artritis Reumatoide , Reumatología , Artritis Reumatoide/diagnóstico , Artritis Reumatoide/terapia , Toma de Decisiones Conjunta , Humanos , Pacientes Ambulatorios , Derivación y ConsultaRESUMEN
Innovative strategies are needed to adequately assess and monitor disease activity of patients with rheumatoid arthritis (RA) in times of scarce appointments. The aim of the TELERA study is to evaluate the feasibility and performance of asynchronous telemedicine visits based on patient-generated data and patient's drug history. RA patients use a medical app, ABATON, that captures the results of a self-performed quick CRP-test, joint-count, and electronic patient-reported outcomes in between visits. This is a prospective, multi-center, randomized controlled trial performed in four German university centers. The estimated sample size is 120 patients. The main outcome is the agreement of rheumatologists' treatment decisions based on asynchronous telemedicine patient-generated data with traditional in-person rheumatology clinic-based decisions and with patient suggestions. The TELERA trial will provide evidence regarding the implementation of remote care in rheumatology. Clinical Trial Registration: This clinical trial was registered at German Registry for Clinical Trials (DRKS). http://www.drks.de/DRKS00016350, identifier: DRKS00024928.
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PURPOSE: Developing technological innovations in healthcare is made complex and difficult due to effects upon the practices of professional, managerial and other stakeholders. Drawing upon the concept of boundary object, this paper explores the challenges of achieving effective collaboration in the development and use of a novel healthcare innovation in the English healthcare system. DESIGN/METHODOLOGY/APPROACH: A case study is presented of the development and implementation of a smart phone application (app) for use by rheumatoid arthritis patients. Over a two-year period (2015-2017), qualitative data from recorded clinical consultations (n = 17), semi-structured interviews (n = 63) and two focus groups (n = 13) were obtained from participants involved in the app's development and use (clinicians, patients, researchers, practitioners, IT specialists and managers). FINDINGS: The case focuses on the use of the app and its outputs as a system of inter-connected boundary objects. The analysis highlights the challenges overcome in the innovation's development and how knowledge sharing between patients and clinicians was enhanced, altering the nature of the clinical consultation. It also shows how conditions surrounding the innovation both enabled its development and inhibited its wider scale-up. ORIGINALITY/VALUE: By recognizing that technological artefacts can simultaneously enable and inhibit collaboration, this paper highlights the need to overcome tensions between the transformative capability of such healthcare innovations and the inhibiting effects simultaneously created on change at a wider system level.
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Objective Our primary objective was to determine whether biophysical profiles (BPP) performed on the antepartum unit result in changes in clinical decision making. Study Design A retrospective cohort chart review was performed among women who had a BPP during hospital admission. BPP status was categorized as normal (8/8 points) and abnormal (6/8 or less points). The primary outcome, clinical decision making, was the need for prolonged external fetal monitoring (defined as > 2 hours) or decision to proceed with delivery. Secondary outcomes included mode of delivery, indicated preterm delivery, birth weight, 5-minute Apgar's score <7, and neonatal intensive care unit (NICU) admission. Results Among our cohort ( n = 186), 85.5% ( n = 159) had a normal BPP. Delivery management was altered in one case (0.54%) by the BPP findings, and there were no BPPs that resulted in need for prolonged monitoring. Compared with women with normal BPP, women with abnormal BPPs were more likely to deliver at <37 weeks, to be admitted to the NICU, or have a 5-minute Apgar's score <7. Conclusion In-hospital BPPs alter clinical decision making in less than 1% of cases.
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OBJECTIVE: To assess baseline predictors of long-term functional disability in patients with inflammatory arthritis (IA). METHODS: We conducted a systematic review of the literature from 1990 to 2017 using MEDLINE and EMBASE. Studies were included if (i) they were prospective observational studies, (ii) all patients had IA with symptom duration ≤2 years at baseline, (iii) follow-up was at least 5 years, and (iv) baseline predictors of HAQ score at long-term follow-up (i.e., ≥5 years following baseline) were assessed. Information on the included studies and estimates of the association between baseline variables and long-term HAQ scores were extracted from the full manuscripts. RESULTS: Of 1037 abstracts identified by the search strategy, 37 met the inclusion/exclusion criteria and were included in the review. Older age at baseline and female gender were reported to be associated with higher long-term HAQ scores in the majority of studies assessing these relationships, as were higher baseline HAQ and greater pain scores (total patients included in analyses reporting significant associations/total number of patients analysed: age 9.8k/10.7k (91.6%); gender 9.9k/11.3k (87.4%); HAQ 4.0k/4.0k (99.0%); pain 2.8k/2.9k (93.6%)). Tender joint count, erythrocyte sedimentation rate (ESR) and DAS28 were also reported to predict long-term HAQ score; other disease activity measures were less consistent (tender joints 2.1k/2.5k (84.5%); erythrocyte sedimentation rate 1.6k/2.2k (72.3%); DAS28 888/1.1k (79.2%); swollen joints 684/2.6k (26.6%); C-reactive protein 279/510 (54.7%)). Rheumatoid factor (RF) and erosions were not useful predictors (RF 546/4.6k (11.9%); erosions 191/2.7k (7.0%)), whereas the results for anti-citrullinated protein antibody positivity were equivocal (ACPA 2.0k/3.8k (52.9%)). CONCLUSIONS: Baseline age, gender, HAQ and pain scores are associated with long-term disability and knowledge of these may aid the assessment of prognosis.
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Artritis Reumatoide/diagnóstico , Evaluación de la Discapacidad , Articulaciones/diagnóstico por imagen , Medición de Resultados Informados por el Paciente , Artritis Reumatoide/diagnóstico por imagen , Humanos , Índice de Severidad de la EnfermedadRESUMEN
OBJECTIVES: Critical digital ischemia is a rare, but serious complication of systemic sclerosis (SSc) and is not always due solely to the non-inflammatory angiopathy that characterizes the SSc disease process. Our objective was to illustrate the range of presentations and causes of critical digital ischemia in patients with SSc in order to highlight how optimal management is dependent upon establishing the correct diagnosis. METHODS: Five cases exemplifying differential diagnoses were identified and their case notes reviewed in order to extract clinically relevant data and images. A review of the literature was performed in PubMed in English. RESULTS: Causes of critical digital ischemia included typical micro-angiopathic changes and proximal (large vessel) disease. One case highlighted the difficulty of ascertaining whether an inflammatory cause is also present in SSc/SLE overlap syndrome. Two cases demonstrated embolic causes (thromboembolism due to atrial fibrillation and septic emboli). CONCLUSIONS: Critical digital ischemia in patients with SSc requires thorough investigation in order to avoid missing additional potentially modifiable causes including large vessel disease, inflammation, embolism, infection, and paraneoplastic syndromes. A firm evidence base for current medical and surgical interventions is lacking, highlighting the need for further research into the optimum management of this rare, but painful, debilitating, and limb-threatening complication of SSc.