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1.
Rheumatology (Oxford) ; 61(8): 3223-3233, 2022 08 03.
Artículo en Inglés | MEDLINE | ID: mdl-34850849

RESUMEN

OBJECTIVES: There is increasing interest in prediction and prevention of RA. It is important to understand the views of those at risk to inform the development of effective approaches. First-degree relatives (FDRs) of RA patients are at increased risk of RA. This study assessed predictors of their interest in predictive testing for RA. METHODS: Questionnaires were completed by RA patients (provided with their questionnaire by a healthcare professional) and their FDRs (provided with their questionnaire by their RA proband). FDR surveys assessed interest in taking a predictive test, demographic variables, perceived RA risk, attitudes about predictive testing, autonomy preferences, illness perceptions, avoidance coping and health anxiety. Patient surveys included demographic variables, disease impact, RA duration and treatment. Ordinal logistic regression examined the association between FDRs' characteristics and their interest in predictive testing. Generalized estimating equations assessed associations between patient characteristics and FDRs' interest in predictive testing. RESULTS: Three hundred and ninety-six FDRs responded. Paired data from the RA proband were available for 292. The proportion of FDRs interested in predictive testing was 91.3%. Information-seeking preferences, beliefs that predictive testing can increase empowerment over health and positive attitudes about risk knowledge were associated with increased interest. Beliefs that predictive testing could cause psychological harm predicted lower interest. Patient characteristics of the proband were not associated with FDRs' interest. CONCLUSIONS: FDRs' interest in predictive testing for RA was high, and factors associated with interest were identified. These findings will inform the development of predictive strategies and informational resources for those at risk.


Asunto(s)
Artritis Reumatoide , Artritis Reumatoide/diagnóstico , Artritis Reumatoide/genética , Familia/psicología , Humanos , Modelos Logísticos , Factores de Riesgo , Encuestas y Cuestionarios
2.
Ophthalmic Plast Reconstr Surg ; 38(2): 180-184, 2022.
Artículo en Inglés | MEDLINE | ID: mdl-34293789

RESUMEN

AIMS: To describe patients with periocular solitary extramedullary plasmacytoma (SEMP) and multiple myeloma (MM), together with an estimate of the risk of progression from SEMP to MM. PATIENTS AND METHODS: A retrospective case-note review for patients seen between 1978 and 2020, examining demographics, presentation, imaging, pathology, management, and outcome. RESULTS: Twenty patients (10 male; 50%) presented at a mean age of 60.9 years, with an average symptom duration of 4.5 months. Ten (50%) patients had known systemic myeloma at ophthalmic presentation (the MM group) and, on average, they presented one decade earlier than those with occult MM discovered after orbital biopsy (p = 0.06); the majority (9/15; 60%) of patients with MM were female, whereas there was a male bias (4/5; 80%) with SEMP (p = 0.30). Most tumors (15/20; 75%) were within the anterior part of the orbit, especially superolaterally (16 patients; 80%), and the soft-tissue mass often appeared to "explode" from the frontal bone or greater wing of the sphenoid (16/20; 80%). Full treatment details were known for 19 patients: 6 (32%) had solely orbital radiotherapy, 4 (21%) chemotherapy, 6 (32%) combined chemoradiation, and 3 (16%) had combined chemoradiation with stem-cell transplant (Table 3). After an average follow up of 58 months, 1/5 (20%) patients with SEMP and 11/15 (73%) with MM had tumor-related death. The overall survival probability for all 20 patients with periocular plasmacytoma was 34% at 5 and 10 years, with MM patients having a worse outlook (27% 5-year, and 18% 10-year survival) compared with SEMP (53% survival at 5 and 10 years) (p = 0.18). None of the 5 patients with SEMP progressed to systemic MM over an average follow up of 9.1 years. CONCLUSIONS: Although 50% patients with periocular plasmacytoma appear to have a SEMP at ophthalmic presentation, a half of these patients were found to have occult MM within 6 months of biopsy. Of those without systemic disease around the time of biopsy, none developed MM over an average follow up of more than 9 years.


Asunto(s)
Neoplasias Óseas , Mieloma Múltiple , Plasmacitoma , Neoplasias Óseas/diagnóstico , Femenino , Humanos , Masculino , Persona de Mediana Edad , Mieloma Múltiple/diagnóstico , Mieloma Múltiple/terapia , Plasmacitoma/diagnóstico , Plasmacitoma/patología , Plasmacitoma/terapia , Estudios Retrospectivos
3.
BMC Med Educ ; 22(1): 607, 2022 Aug 05.
Artículo en Inglés | MEDLINE | ID: mdl-35932046

RESUMEN

INTRODUCTION: Clinical examinations (assessments) are integral to ensuring that medical students can treat patients safely and effectively. The COVID-19 pandemic disrupted traditional formats of clinical examinations. This prompted Medical Schools to adapt their approaches to conducting these examinations to make them suitable for delivery in the pandemic. This systematic review aims to identify the approaches that Medical Schools, internationally, adopted in adapting their clinical examinations of medical students in response to the COVID-19 pandemic. METHODS: Three databases and four key medical education journals were systematically searched up to 22 October 2021; a grey literature search was also undertaken. Two reviewers independently screened at title, abstract stage and full text stage against predefined eligibility criteria. Discrepancies were resolved by discussion and involvement of senior authors. Risk of bias assessment was performed using an adapted version of a pre-existing risk of bias assessment tool for medical education developments. Results were summarised in a narrative synthesis. RESULTS: A total of 36 studies were included, which documented the approaches of 48 Medical Schools in 17 countries. Approaches were categorised into in-person clinical examinations (22 studies) or online clinical examinations (14 studies). Authors of studies reporting in-person clinical examinations described deploying enhanced infection control measures along with modified patient participation. Authors of studies reporting online clinical examinations described using online software to create online examination circuits. All authors reported that adapted examinations were feasible, scores were comparable to previous years' student cohorts, and participant feedback was positive. Risk of bias assessment highlighted heterogeneity in reporting of the clinical examinations. CONCLUSIONS: This review identified two broad approaches to adapting clinical examinations in the pandemic: in-person and online. Authors reported it was feasible to conduct clinical examinations in the pandemic where medical educators are given sufficient time and resources to carefully plan and introduce suitable adaptations. However, the risk of bias assessment identified few studies with high reporting quality, which highlights the need for a common framework for reporting of medical education developments to enhance reproducibility across wider contexts. Our review provides medical educators with the opportunity to reflect on past practises and facilitate the design and planning of future examinations.


Asunto(s)
COVID-19 , Educación Médica/métodos , Pandemias , Estudiantes de Medicina , COVID-19/epidemiología , COVID-19/prevención & control , Educación Médica/tendencias , Humanos , Reproducibilidad de los Resultados
4.
Ann Rheum Dis ; 76(7): 1161-1168, 2017 Jul.
Artículo en Inglés | MEDLINE | ID: mdl-27965259

RESUMEN

Labial salivary gland (LSG) biopsy is used in the classification of primary Sjögren's syndrome (PSS) and in patient stratification in clinical trials. It may also function as a biomarker. The acquisition of tissue and histological interpretation is variable and needs to be standardised for use in clinical trials. A modified European League Against Rheumatism consensus guideline development strategy was used. The steering committee of the ad hoc working group identified key outstanding points of variability in LSG acquisition and analysis. A 2-day workshop was held to develop consensus where possible and identify points where further discussion/data was needed. These points were reviewed by a subgroup of experts on PSS histopathology and then circulated via an online survey to 50 stakeholder experts consisting of rheumatologists, histopathologists and oral medicine specialists, to assess level of agreement (0-10 scale) and comments. Criteria for agreement were a mean score ≥6/10 and 75% of respondents scoring ≥6/10. Thirty-nine (78%) experts responded and 16 points met criteria for agreement. These points are focused on tissue requirements, identification of the characteristic focal lymphocytic sialadenitis, calculation of the focus score, identification of germinal centres, assessment of the area of leucocyte infiltration, reporting standards and use of prestudy samples for clinical trials. We provide standardised consensus guidance for the use of labial salivary gland histopathology in the classification of PSS and in clinical trials and identify areas where further research is required to achieve evidence-based consensus.


Asunto(s)
Centro Germinal/patología , Linfocitos/patología , Glándulas Salivales Menores/patología , Sialadenitis/patología , Síndrome de Sjögren/patología , Biopsia , Técnica Delphi , Humanos , Leucocitos/patología , Labio , Estándares de Referencia
5.
BMC Musculoskelet Disord ; 18(1): 258, 2017 Jun 14.
Artículo en Inglés | MEDLINE | ID: mdl-28615051

RESUMEN

BACKGROUND: When people first experience symptoms of rheumatoid arthritis (RA) they often delay seeking medical attention resulting in delayed diagnosis and treatment. This research assesses behaviours people might engage in prior to, or instead of, seeking medical attention and compares these with behaviours related to illnesses which are better publicised. METHODS: Thirty-one qualitative interviews with members of the general public explored intended actions in relation to two hypothetical RA vignettes (with and without joint swelling) and two non-RA vignettes (bowel cancer and angina). The interviews were audio-recorded and transcribed. Analysis focused on intended information gathering and other self-management behaviours in the interval between symptom onset and help-seeking. RESULTS: Participants were more likely to envision self-managing symptoms when confronted with the symptoms of RA compared to the other vignettes. Participants would look for information to share responsibility for decision making and get advice and reassurance. Others saw no need for information seeking, perceived the information available as untrustworthy or, particularly in the case of bowel cancer and angina, would not want to delay seeking medical attention. Participants further anticipated choosing not to self-manage the symptoms; actively monitoring the symptoms (angina/ bowel cancer) or engaging in self-treatment of symptom(s). DISCUSSION: These results help define targets for interventions to increase appropriate help-seeking behaviour for people experiencing the initial symptoms of RA, such as educational interventions directed at allied healthcare professionals from whom new patients may seek information on self-management techniques, or the development of authoritative and accessible informational resources for the general public.


Asunto(s)
Artritis Reumatoide/diagnóstico , Toma de Decisiones , Conducta de Búsqueda de Ayuda , Aceptación de la Atención de Salud , Derivación y Consulta , Adulto , Anciano , Anciano de 80 o más Años , Artritis Reumatoide/psicología , Diagnóstico Tardío/efectos adversos , Femenino , Humanos , Conducta en la Búsqueda de Información , Masculino , Persona de Mediana Edad , Relaciones Profesional-Paciente , Investigación Cualitativa , Autocuidado/efectos adversos , Adulto Joven
6.
J Foot Ankle Surg ; 56(5): 917-921, 2017.
Artículo en Inglés | MEDLINE | ID: mdl-28579126

RESUMEN

Jones fractures are among the most common fractures of the foot; however, much remains unknown about their etiology. The purpose of the present study was to further examine the risk factors of forefoot and hindfoot alignment on Jones fractures using an epidemiologic study design. We used a retrospective, matched, case-control study design. Cases consisted of patients with acute, isolated Jones fractures confirmed on plain film radiographs seen at our institute from January 2009 to December 2013. Patients presenting with pain unrelated to metatarsal fractures served as controls. Controls were matched to cases by age (±2 years), gender, and year of presentation. Weightbearing foot radiographs were assessed for 13 angular relationships by a single rater. Conditional multivariable logistic regression was used to identify important risk factors. Fifty patients with acute Jones fractures and 200 controls were included. The only significant variables in the final multivariable model were the metatarsus adductus angle (odds ratio [OR] 1.16, 95% confidence interval [CI] 1.08 to 1.25) and fourth/fifth intermetatarsal angle (OR 0.69, 95% CI 0.57 to 0.83)-both measures of static forefoot adduction. The presence of metatarsus adductus (defined as >15°) on foot radiographs was associated with a 2.4 times greater risk of a Jones fracture (adjusted OR 2.4, 95% CI 1.2 to 4.8). We have concluded that the risk of Jones fracture increases with an adducted forefoot posture. In our population, which consisted primarily of patients presenting after a fall (10 of 50; 20%) or misstep/inversion injury (19 of 50; 38%), the hindfoot alignment appeared to be a less important factor.


Asunto(s)
Antepié Humano/anomalías , Fracturas Óseas/etiología , Huesos Metatarsianos/lesiones , Metatarso Varo/complicaciones , Adulto , Anciano , Estudios de Casos y Controles , Femenino , Antepié Humano/diagnóstico por imagen , Fracturas Óseas/diagnóstico por imagen , Fracturas Óseas/epidemiología , Humanos , Incidencia , Modelos Logísticos , Masculino , Huesos Metatarsianos/diagnóstico por imagen , Metatarso Varo/diagnóstico por imagen , Persona de Mediana Edad , Análisis Multivariante , Radiografía/métodos , Estudios Retrospectivos , Medición de Riesgo , Adulto Joven
7.
BMC Endocr Disord ; 16(1): 24, 2016 May 26.
Artículo en Inglés | MEDLINE | ID: mdl-27230479

RESUMEN

BACKGROUND: Prevalence of diabetes and cardiovascular (CVD) disease amongst UK South Asians is higher than in the general population. Non-adherence to medicines may lead to poor clinical outcomes for South Asian patients with diabetes and CVD. To understand the decision making processes associated with taking medicines, a qualitative systematic meta-synthesis exploring medicine taking behaviours, and beliefs was undertaken. METHODS: Four databases (Medline, Embase, Science Citation Index and CINAHL) were searched to identify qualitative studies of South Asian patients taking diabetic medicines. Data were thematic coded and synthesised. RESULTS: The following themes were identified: [1] beliefs about the need for and efficacy of medicines; [2] toxicity of medicines and polypharmacy; [3] the necessity of traditional remedies versus "western medicines"; [4] stigma and social support; and [5] communication. CONCLUSIONS: South Asians described cultural social stigma associated with diabetes and reported fears about drug toxicity as barriers to taking medicines. Cultural beliefs about traditional remedies and interactions with healthcare professionals also appeared to play a role in the way people made decisions about medicines. Advice should be tailored provided to South Asian patients highlighting the long term consequences of diabetes and CVD.


Asunto(s)
Pueblo Asiatico/psicología , Enfermedades Cardiovasculares/psicología , Diabetes Mellitus/psicología , Cooperación del Paciente/psicología , Enfermedades Cardiovasculares/tratamiento farmacológico , Diabetes Mellitus/tratamiento farmacológico , Humanos , Medicina Tradicional/psicología , Aceptación de la Atención de Salud/psicología , Estigma Social , Apoyo Social , Reino Unido
8.
Health Expect ; 18(6): 2340-55, 2015 Dec.
Artículo en Inglés | MEDLINE | ID: mdl-24889289

RESUMEN

BACKGROUND: Early treatment for rheumatoid arthritis (RA) is vital. However, people often delay in seeking help at symptom onset. An assessment of the reasons behind patient delay is necessary to develop interventions to promote rapid consultation. OBJECTIVE: Using a mixed methods design, we aimed to develop and test a questionnaire to assess the barriers to help seeking at RA onset. DESIGN: Questionnaire items were extracted from previous qualitative studies. Fifteen people with a lived experience of arthritis participated in focus groups to enhance the questionnaire's face validity. The questionnaire was also reviewed by groups of multidisciplinary health-care professionals. A test-retest survey of 41 patients with newly presenting RA or unclassified arthritis assessed the questionnaire items' intraclass correlations. RESULTS: During focus groups, participants rephrased questions, added questions and deleted items not relevant to the questionnaire's aims. Participants organized items into themes: early symptom experience, initial reactions to symptoms, self-management behaviours, causal beliefs, involvement of significant others, pre-diagnosis knowledge about RA, direct barriers to seeking help and relationship with GP. The test-retest survey identified seven items (out of 79) with low intraclass correlations which were removed from the final questionnaire. CONCLUSION: The involvement of people with a lived experience of arthritis and multidisciplinary health-care professionals in the preliminary validation of the DELAY (delays in evaluating arthritis early) questionnaire has enriched its development. Preliminary assessment established its reliability. The DELAY questionnaire provides a tool for researchers to evaluate individual, cultural and health service barriers to help-seeking behaviour at RA onset.


Asunto(s)
Conducta de Búsqueda de Ayuda , Aceptación de la Atención de Salud , Encuestas y Cuestionarios , Adulto , Anciano , Artritis Reumatoide/diagnóstico , Artritis Reumatoide/terapia , Femenino , Humanos , Masculino , Investigación Cualitativa , Derivación y Consulta , Reproducibilidad de los Resultados , Autocuidado
9.
Rheumatology (Oxford) ; 53(9): 1646-53, 2014 Sep.
Artículo en Inglés | MEDLINE | ID: mdl-24729397

RESUMEN

OBJECTIVE: The aim of this study was to explore symptoms and symptom development during the earliest phases of RA in patients with seropositive arthralgia and patients newly diagnosed with RA. METHODS: Interviews were conducted with 15 seropositive patients (anti-CCP positive, and often with arthralgia) and 11 newly presenting RA patients [classified according to the 2010 ACR/European League Against Rheumatism (EULAR) criteria]. Feedback procedures shared the experiences of seropositive arthralgia patients with early RA patients and vice versa. Data were analysed using thematic analysis. RESULTS: Symptoms common to both groups included joint pain, psychological distress, muscle cramps, abnormal skin sensations, stiffness, loss of motor control, weakness, fatigue and sleeping difficulties. Also, patterns of symptom evolution and the order of symptom development were described. Seropositive arthralgia patients described pain as annoying, while RA patients described how the severity of pain intensified before diagnosis, to the point where symptoms were psychologically distressing. Patients with seropositive arthralgia described reddening of the skin and burning sensations that they felt were indicative of the onset of swelling. Intense pain appeared to precede the onset of swelling for those with RA, which was often palindromic and travelled between joints until it later became persistent. CONCLUSION: This study highlights the breadth of symptoms that constitute the earliest phases of RA. Further research is needed to develop measures of symptom patterns and clusters to allow the predictive utility of symptoms to be assessed and to allow the integration of aspects of the patient's history into evidence-based investigative and management algorithms for use in primary and secondary care.


Asunto(s)
Artralgia/diagnóstico , Artritis Reumatoide/diagnóstico , Actitud Frente a la Salud , Adulto , Anciano , Anciano de 80 o más Años , Artralgia/complicaciones , Artralgia/psicología , Artritis Reumatoide/complicaciones , Artritis Reumatoide/psicología , Biomarcadores/sangre , Progresión de la Enfermedad , Diagnóstico Precoz , Femenino , Humanos , Masculino , Persona de Mediana Edad , Dolor/etiología , Dolor/psicología , Péptidos Cíclicos/sangre , Investigación Cualitativa , Índice de Severidad de la Enfermedad , Estrés Psicológico/etiología , Estrés Psicológico/psicología
10.
Scand J Prim Health Care ; 32(1): 37-43, 2014 Mar.
Artículo en Inglés | MEDLINE | ID: mdl-24635577

RESUMEN

OBJECTIVE: To explore general practitioners' (GPs') perspectives on public health campaigns to encourage people with the early symptoms of rheumatoid arthritis (RA) to seek medical help rapidly. DESIGN: Nineteen GPs participated in four semi-structured focus groups. Focus groups were audio-recorded, transcribed verbatim, and analysed using thematic analysis. RESULTS: GPs recognised the need for the early treatment of RA and identified that facilitating appropriate access to care was important. However, not all held the view that a delay in help seeking was a clinically significant issue. Furthermore, many were concerned that the early symptoms of RA were often non-specific, and that current knowledge about the nature of symptoms at disease onset was inadequate to inform the content of a help-seeking campaign. They argued that a campaign might not be able to specifically target those who need to present urgently. Poorly designed campaigns were suggested to have a negative impact on GPs' workloads, and would "clog up" the referral pathway for genuine cases of RA. CONCLUSIONS: GPs were supportive of strategies to improve access to Rheumatological care and increase public awareness of RA symptoms. However, they have identified important issues that need to be considered in developing a public health campaign that forms part of an overall strategy to reduce time to treatment for patients with new onset RA. This study highlights the value of gaining GPs' perspectives before launching health promotion campaigns.


Asunto(s)
Artritis Reumatoide/terapia , Actitud del Personal de Salud , Medicina Familiar y Comunitaria , Conductas Relacionadas con la Salud , Promoción de la Salud/métodos , Adulto , Grupos Focales , Humanos , Educación del Paciente como Asunto/métodos , Salud Pública
12.
Patient Educ Couns ; 112: 107713, 2023 07.
Artículo en Inglés | MEDLINE | ID: mdl-37003160

RESUMEN

First-degree relatives (FDRs) of people with rheumatoid arthritis (RA) are increasingly recruited to prediction and prevention studies. Access to FDRs is usually via their proband with RA. Quantitative data on predictors of family risk communication are lacking. RA patients completed a questionnaire assessing likelihood of communicating RA risk information to their FDRs, demographic variables, disease impact, illness perceptions, autonomy preferences, interest in FDRs taking a predictive test for RA, dispositional openness, family functioning, and attitudes towards predictive testing. Ordinal regression examined associations between patients' characteristics and their median likelihood of communicating RA risk to FDRs. Questionnaires were completed by 482 patients. The majority (75.1%) were likely/extremely likely to communicate RA risk information to FDRs, especially their children. Decision-making preferences, interest in FDRs taking a predictive test, and beliefs that risk knowledge would increase people's empowerment over their health increased patients' odds of being likely to communicate RA risk information to FDRs. Beliefs that risk information would cause stress to their relatives decreased odds that patients would be likely to communicate RA risk. These findings will inform the development of resources to support family communication about RA risk.


Asunto(s)
Artritis Reumatoide , Autoanticuerpos , Niño , Humanos , Artritis Reumatoide/genética , Factores de Riesgo , Familia , Pacientes
13.
Ann Rheum Dis ; 71(4): 493-7, 2012 Apr.
Artículo en Inglés | MEDLINE | ID: mdl-22121128

RESUMEN

A systematic review of qualitative peer-reviewed publications was conducted to identify drivers of and barriers to help-seeking behaviour in adults with new-onset rheumatoid arthritis (RA). 1058 abstracts were searched to identify relevant publications. 21 relevant publications were identified assessed for quality and subjected to analysis informed by thematic and grounded theory frameworks. Several interacting themes were identified including the early experience of symptoms in relation to disease prototypes, minimising the impact of symptoms, speaking to others, gathering information and seeking alternative treatments, and issues related to accessing health services and attitudes towards healthcare professionals. Many people suggested that they had little knowledge of RA before diagnosis, believing RA to be a mild condition that affected older people. These misperceptions made correct symptom interpretation unlikely. Normalising and ignoring symptoms led people to delay in help-seeking. However, when symptoms impacted on daily activities help was usually sought. Individual interpretations of symptoms are both drivers of and barriers to help seeking. Targeted public health interventions are required to inform symptom interpretation and reduce delays.


Asunto(s)
Artritis Reumatoide/diagnóstico , Aceptación de la Atención de Salud , Artritis Reumatoide/psicología , Artritis Reumatoide/terapia , Actitud Frente a la Salud , Diagnóstico Tardío , Promoción de la Salud/métodos , Accesibilidad a los Servicios de Salud , Humanos
14.
BMC Rheumatol ; 6(1): 50, 2022 Aug 24.
Artículo en Inglés | MEDLINE | ID: mdl-35999571

RESUMEN

BACKGROUND: Rheumatoid arthritis (RA) is a chronic inflammatory arthritis which can cause joint damage and reduced quality of life. Early treatment of RA within 3 months of symptom onset is associated with improved clinical outcomes. However, this window of opportunity is often missed. One important contributing factor is patients with symptoms of RA delaying consulting their general practitioner (GP). Previous research indicates that patients with inflammatory arthritis are likely to visit pharmacies for advice before consulting their GP. Therefore, pharmacists are well positioned to identify patients with symptoms of early inflammatory arthritis and signpost them appropriately. This research examines community pharmacy staff's knowledge, perceptions, and approaches to management of patients presenting with symptoms of RA in order to identify training needs and other opportunities for intervention to enhance the role of pharmacy staff in the pathway to care. METHODS: Semi-structured interviews were conducted with 19 community pharmacy staff in the West Midlands (UK), during a 12-month period (2017-2018). The interviews were audio-recorded, transcribed, and analyzed using thematic analysis facilitated by NVivo 12. RESULTS: There was considerable variation in knowledge and perceptions of RA and the need for early treatment amongst pharmacists and other pharmacy staff. The potential role of pharmacists and other pharmacy staff in reducing delay in help-seeking was also discussed. Four themes emerged from thematic analysis: (1) Variations in perceptions and knowledge about RA. (2) The role of the pharmacy in increasing public awareness about RA. (3) The role of the pharmacy staff in facilitating access to the GP. (4) Practical considerations for pharmacy-based interventions. CONCLUSION: Variability in knowledge and perceptions of RA amongst pharmacists, and amongst other pharmacy staff will affect effective signposting of suspected RA cases. This study identifies opportunities for enhanced training of community pharmacists and other pharmacy staff in relation to inflammatory arthritis as well as other pharmacy-based interventions, such as public awareness campaigns about RA and other musculoskeletal conditions. Together with existing referral services and other pharmacy-based initiatives this could result in enhanced signposting to GP consultation or other appropriate NHS services for inflammatory symptoms and reduced treatment delay.

15.
Ann Rheum Dis ; 70(10): 1822-5, 2011 10.
Artículo en Inglés | MEDLINE | ID: mdl-21821867

RESUMEN

OBJECTIVE: The first 3 months after symptom onset represent an important therapeutic window for rheumatoid arthritis (RA). This study investigates the extent and causes of delay in assessment of patients with RA in eight European countries. METHOD: Data on the following levels of delay were collected from 10 centres (Berlin, Birmingham, Heraklion, Lund, Prague, Stockholm, Umeå, Vienna, Warsaw and Zurich): (1) from onset of RA symptoms to request to see healthcare professional (HCP); (2) from request to see HCP to assessment by that HCP; (3) from initial assessment by HCP to referral to rheumatologist; and (4) from referral to rheumatologist to assessment by that rheumatologist. RESULTS: Data were collected from 482 patients with RA. The median delay across the 10 centres from symptom onset to assessment by the rheumatologist was 24 weeks, with the percentage of patients seen within 12 weeks of symptom onset ranging from 8% to 42%. There were important differences in the levels underlying the total delays at individual centres. CONCLUSIONS: This research highlights the contribution of patients, professionals and health systems to treatment delay for patients with RA in Europe. Although some centres have strengths in minimising certain types of delay, interventions are required in all centres to ensure timely treatment for patients.


Asunto(s)
Artritis Reumatoide/diagnóstico , Diagnóstico Tardío/estadística & datos numéricos , Adulto , Anciano , Europa (Continente) , Femenino , Humanos , Masculino , Persona de Mediana Edad , Aceptación de la Atención de Salud/estadística & datos numéricos , Atención Primaria de Salud/normas , Atención Primaria de Salud/estadística & datos numéricos , Derivación y Consulta/normas , Derivación y Consulta/estadística & datos numéricos , Factores de Tiempo
16.
Res Involv Engagem ; 6: 6, 2020.
Artículo en Inglés | MEDLINE | ID: mdl-32099665

RESUMEN

PLAIN ENGLISH SUMMARY: Patient and public involvement (PPI) improves the quality of health research and ensures that research is relevant to patients' needs. Though PPI is increasingly evident in clinical and health services research, there are few examples in the research literature of effective PPI in translational and laboratory-based research. In this paper, we describe the development and evaluation of PPI in a multi-centre European project (EuroTEAM - Towards Early biomarkers in Arthritis Management) that included both translational and laboratory-based and psychosocial research. We found that although most PPI in EuroTEAM was centred around the psychosocial research, there were examples of PPI in the laboratory studies. As the project evolved, researchers became better at accommodating PPI and identifying PPI opportunities. It was generally agreed that PPI had a positive impact on the project overall, particularly on public engagement with the research. We concluded that the inclusion of both psychosocial and laboratory-based research in the same project facilitated PPI across all aspects of the research. In future projects, we would try to specify individual PPI activities in more detail at the project-planning stage, and better accommodate patient partners who are not native speakers of English. ABSTRACT: Background Patient and public involvement (PPI) enhances research quality and relevance and is central to contemporary health policy. The value of PPI has been recognised in rheumatology research, though there are limited examples of PPI in basic and translational science. The EU FP7 funded 'EuroTEAM' (Towards Early biomarkers in Arthritis Management) project was established to develop biomarker-based approaches to predict the future development of rheumatoid arthritis and incorporated psychosocial research to investigate the perceptions of 'at risk' individuals about predictive testing, and to develop informational resources about rheumatoid arthritis (RA) risk. Patient involvement was central to EuroTEAM from the inception of the project. The objective of this paper is to describe the development of PPI in EuroTEAM, formatively assess the impact of PPI from the perspectives of researchers and patient research partners (PRPs), reflect on successes and lessons learned, and formulate recommendations to guide future projects.Methods Two mixed-methods surveys (for PRPs and researchers) and a teleconference were undertaken to assess the impact of PPI on individual work packages and on EuroTEAM overall.Results There was consensus about the positive impact of PPI on the research and on the experiences of those involved. In particular, the positive impact of PPI on the personal development of researchers, and on effective public engagement with EuroTEAM research were highlighted. Researchers described adapting their practice in future projects to facilitate PPI. Spin-off projects and ongoing collaborations between PRPs and researchers reflected the value of PPI to participants. PPI was more frequently integrated in psychosocial research, though examples of PPI in laboratory/translational science were also described. PRPs asked for more opportunities to contribute meaningfully to basic scientific research and for more extensive feedback on their contributions.Conclusions The findings were used to formulate recommendations to guide effective involvement of patients in future similar projects, including identifying specific training requirements for PRPs and researchers, the identification of PRP focused tasks/deliverables at the project planning stage, and supporting access to involvement for all PRPs. Importantly, the distinctive multidisciplinary approach of EuroTEAM, incorporating both basic science and psychosocial research, facilitated patient involvement in the project overall.

17.
Arthritis Care Res (Hoboken) ; 72(3): 360-368, 2020 03.
Artículo en Inglés | MEDLINE | ID: mdl-30710453

RESUMEN

OBJECTIVE: Little is known about the experiences, values, and needs of people without arthritis who undergo predictive biomarker testing for the development of rheumatoid arthritis (RA). Our study aimed to explore the perspectives of these individuals and describe their information needs. METHODS: A qualitative, multicenter interview study with a thematic analysis was conducted in Austria, Germany and the UK. Individuals were interviewed who underwent predictive biomarker testing for RA and had a positive test result but no diagnosis of any inflammatory joint disease. Participants included patients with arthralgia and asymptomatic individuals. Information and education needs were developed from the qualitative codes and themes using the Arthritis Educational Needs Assessment Tool as a frame of reference. RESULTS: Thematic saturation was reached in 34 individuals (76% female, 24 [71%] with arthralgia, and 10 [29%] asymptomatic individuals). Thirty-seven codes were summarized into 4 themes: 1) decision-making around whether to undergo initial predictive testing, 2) willingness to consider further predictive tests, and/or 3) preventive interventions, including medication, and 4) varying reactions after receiving a positive test result. Individuals with arthralgia were more likely to be willing to take preventive action, undergo further testing, and experience psychological distress than asymptomatic individuals. All participants expressed the need for tailored, patient-understandable information. CONCLUSION: Individuals at risk of RA are currently the subjects of research aimed at developing better predictive strategies and preventive approaches. Their perceptions and needs should be addressed to inform the future development of interventions combined with education.


Asunto(s)
Anticuerpos Antiproteína Citrulinada/sangre , Artritis Reumatoide/prevención & control , Enfermedades Asintomáticas/psicología , Quimioprevención/psicología , Factor Reumatoide/sangre , Adolescente , Adulto , Anciano , Anciano de 80 o más Años , Artralgia/etiología , Artralgia/prevención & control , Artralgia/psicología , Artritis Reumatoide/sangre , Femenino , Humanos , Entrevistas como Asunto , Masculino , Persona de Mediana Edad , Investigación Cualitativa , Adulto Joven
18.
Rheumatol Adv Pract ; 3(2): rkz042, 2019.
Artículo en Inglés | MEDLINE | ID: mdl-31768498

RESUMEN

OBJECTIVE: The aim was to explore the perceptions of rheumatology health-care professionals (HCPs) of interacting with patients of South Asian origin attending early inflammatory arthritis clinics. METHODS: We used face-to-face semi-structured interviews, designed in partnership with a clinician partner, to interview 10 HCPs involved in the running of early inflammatory arthritis clinics across seven centres in the UK. Data were recorded, transcribed by an independent company and analysed using inductive thematic analysis. RESULTS: Three emerging themes were identified that characterized consulting experiences of HCPs: varied approaches were used in early inflammatory arthritis clinic; the challenges for rheumatology HCPs in managing and delivering information to patients of South Asian origin in early inflammatory arthritis clinics; and moving towards good practice, the views on managing future patients of South Asian origin in early inflammatory arthritis clinics. Overall, HCPs found that they required additional skills to support the engagement and management for patients of South Asian origin living with inflammatory arthritis. The HCPs felt that they were less effective in addressing self-management issues for this patient group, and they found it difficult to determine adherence to medication. In such consultations, HCPs perceived that their own limitation of inadequate training contributed towards poor consultations. CONCLUSION: For the first time, our data demonstrate that the management of patients of South Asian origin in early inflammatory arthritis clinics is under-served. To address this, HCPs have identified training needs to improve knowledge and skills in engaging with and supporting patients of South Asian origin. These findings provide a good direction for future research.

19.
Rheumatol Adv Pract ; 3(2): rkz017, 2019.
Artículo en Inglés | MEDLINE | ID: mdl-31528840

RESUMEN

OBJECTIVE: The aim was to explore how UK South Asian patients living with RA interact with health care professionals and experience receiving health information in an early inflammatory arthritis clinic. METHODS: A semi-structured interview schedule, designed in conjunction with a patient partner, was used for face-to-face interviews. South Asian participants with RA were recruited from Central Manchester University Hospitals National Health Service Foundation Trust. Data were recorded and transcribed by an independent company. Data were analysed using inductive thematic analysis. RESULTS: Fifteen participants were interviewed. Three predominant themes emerged around participants' experiences and interaction with health care professionals in early inflammatory arthritis clinic. First, 'the personal experiences of RA and cultural link to early inflammatory arthritis clinic', where participants described the impact of RA as individuals and their altered roles within their cultural setting. Second, 'experiences of interacting and receiving information in the early inflammatory arthritis clinic', where participants described their limited engagement with health care professionals and the quality of information discussed in the clinic. Third, 'views on future content for early inflammatory arthritis clinics', where participants highlighted new innovative ideas to build on current practice. CONCLUSION: We believe this to be the first study to generate insight into the experiences of South Asian patients of interacting with health care professionals while attending an early inflammatory arthritis clinic. Policy directives aimed at improving access to services and delivery of information for ethnic minority groups in early inflammatory arthritis clinics should include consideration of the different roles of cultures. Professionals should be cognizant of the factors that drive health inequalities and focus on improving service delivery.

20.
Semin Arthritis Rheum ; 48(5): 815-820, 2019 04.
Artículo en Inglés | MEDLINE | ID: mdl-30072114

RESUMEN

BACKGROUND: Rheumatoid arthritis (RA) has articular and non-articular manifestations. Early, intensive treatment has substantial benefit for both. This requires patients be identified as soon as symptoms develop. OBJECTIVES: To determine whether selected signs and symptoms can be identified in the primary care records of patients prior to a formal diagnosis of RA being made and, if so, how early they can be identified. METHODS: A case-control study was constructed within the UK Clinical Practice Research Datalink (CPRD). 3577 individuals with 'definite' RA, were matched to 14,287 individuals without inflammatory arthritis. An index date was established (i.e., date general practitioner (GP) first appeared to suspect RA). Rates of consultation and consultations for suspected early RA symptoms were compared in cases and controls in the two years prior to the index date using conditional logistic regression, adjusted for number of consultations. RESULTS: The mean (standard deviation) age of participants was 58.8 (14.5) years and 66.8% were female. Rates of any consultation were significantly higher in RA cases than in controls for at least two years prior to the index date. Cases were more likely to have a pre-diagnosis coded consultation for joint, and particularly hand symptoms (aOR 11.44 (9.60, 13.63)), morning stiffness (8.10 (3.54, 18.5)), carpal tunnel syndrome (4.57 (3.54, 5.88)) and other non-articular features. CONCLUSIONS: In patients who develop RA, GP consultation rates are higher for at least two years prior to the first recorded suspicion of RA. This study highlights symptoms that should raise a GP's index of suspicion for RA.


Asunto(s)
Artritis Reumatoide/diagnóstico , Síntomas Prodrómicos , Adulto , Anciano , Artralgia/diagnóstico , Artritis Reumatoide/fisiopatología , Estudios de Casos y Controles , Diagnóstico Precoz , Femenino , Humanos , Masculino , Persona de Mediana Edad , Atención Primaria de Salud/estadística & datos numéricos , Derivación y Consulta/estadística & datos numéricos , Factores de Riesgo
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