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BACKGROUND: Treatment of juvenile idiopathic arthritis (JIA) has changed dramatically since the introduction of biological agents in 1999. OBJECTIVE: To evaluate trends in prescription patterns of biological agents and the subsequent outcome of JIA. METHODS: The Arthritis and Biologics in Children register (multicentre prospective observational study) aimed to include all consecutive patients with JIA in the Netherlands who had started biological agents since 1999. Patients were divided according to year of introduction of first biological agent. Patient characteristics at introduction of the first biological agent and its effectiveness were analysed over 12â years. RESULTS: 335 patients with non-systemic JIA and 86 patients with systemic JIA started a biological agent between 1999 and 2010. Etanercept remained the most often prescribed biological agent for non-systemic JIA; anakinra became first choice for systemic JIA. The use of systemic glucocorticoids and synthetic disease-modifying antirheumatic drugs before biological agents decreased. During these 12â years of observation, biological agents were prescribed earlier in the disease course and to patients with lower baseline JADAS (Juvenile Arthritis Disease Activity Score) disease activity. All baseline disease activity parameters were lowered in patients with non-systemic JIA. In systemic JIA, prescription patterns changed towards very early introduction of biological agents (median 0.4â years of disease duration) in patients with a low number of joints with active arthritis and high erythrocyte sedimentation rates. These changes for both systemic and non-systemic JIA resulted in more patients with inactive disease after 3 and 15â months of treatment. CONCLUSIONS: Biological agents are increasingly prescribed, earlier in the disease and in patients with JIA with lower disease activity. These changes are accompanied by better short-term disease outcomes.
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Artritis Juvenil/tratamiento farmacológico , Artritis Juvenil/epidemiología , Factores Biológicos/uso terapéutico , Pautas de la Práctica en Medicina/tendencias , Sistema de Registros , Antirreumáticos/uso terapéutico , Niño , Preescolar , Etanercept , Femenino , Glucocorticoides/uso terapéutico , Humanos , Inmunoglobulina G/uso terapéutico , Masculino , Países Bajos/epidemiología , Estudios Prospectivos , Receptores del Factor de Necrosis Tumoral/uso terapéutico , Estudios Retrospectivos , Índice de Severidad de la Enfermedad , Resultado del TratamientoRESUMEN
OBJECTIVE: To carry out a longitudinal investigation of functional outcome, health-related quality of life (HRQoL) and treatment strategies in JIA patients who started etanercept >5 years ago. METHODS: We approached patients whose HRQoL changes were described previously in a subanalysis of the Dutch Arthritis and Biologicals in Children register. Recent disease status, co-morbidities and structural damage were retrieved. Disability and HRQoL were assessed by (Childhood) HAQ [(C)HAQ], Child Health Questionnaire, Short Form 36 and Health Utilities Index Mark 3. Changes over time were analysed with linear mixed models. RESULTS: Forty-three patients (81% response) started etanercept a median 8.5 years ago. At the time of this long-term analysis, median age was 22 years (interquartile range: 18-24 years). HRQoL outcome was similar to HRQoL 15-27 months after the initiation of etanercept; 42% had a (C)HAQ of 0.00 and 67% had achieved inactive disease. Patients reported increasing levels of bodily pain compared with earlier measurements. Unemployment (12%) was comparable to the general population; educational level was higher. Use of biologic agents was as follows: 40% etanercept; 40% other biologic agents; and 20% none. Joint surgery occurred in 14% of patients. CONCLUSION: At a median 8.5 years after the commencement of etanercept treatment, JIA patients maintain most of the acquired improvement in HRQoL. Although disability and disease activity are low, chronic pain remains an issue. Persistence and possible deterioration of radiological damage emphasize the importance of early treatment. The fact that 20% of patients do not use any anti-rheumatic medication shows that clinical remission of medication might be an achievable goal.
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Artritis Juvenil/tratamiento farmacológico , Productos Biológicos/uso terapéutico , Etanercept/uso terapéutico , Calidad de Vida , Sistema de Registros , Índice de Severidad de la Enfermedad , Artralgia/epidemiología , Artritis Juvenil/epidemiología , Artritis Juvenil/psicología , Niño , Preescolar , Evaluación de la Discapacidad , Femenino , Estudios de Seguimiento , Humanos , Incidencia , Estudios Longitudinales , Masculino , Países Bajos/epidemiología , Estudios Prospectivos , Calidad de Vida/psicología , Encuestas y Cuestionarios , Resultado del TratamientoRESUMEN
OBJECTIVE: To evaluate the effectiveness and safety of switching to a second or third biological agent in juvenile idiopathic arthritis (JIA) after etanercept failure. METHODS: The Arthritis and Biologicals in Children Register aims to include all Dutch JIA patients who have used biological agents. Data on the disease course were used to estimate drug survival with Kaplan-Meier and calculate adverse event (AE) rates. RESULTS: Of 307 biologically naive JIA patients who started etanercept, 80 (26%) switched to a second and 22 (7%) to a third biological agent. During 1030 patient-years of follow-up after the introduction of etanercept, 49 switches to adalimumab, 28 infliximab, 17 anakinra, four abatacept and four trial drugs were evaluated. 84% (95% CI 80% to 88%) of patients who started etanercept as a first biological agent were, after 12 months, still on the drug, compared with 47% (95% CI 35% to 60%) who started a second and 51% (95% CI 26% to 76%) who started a third biological agent. Patients who switched because of primary ineffectiveness continued the second agent less often (32%, 95% CI 12% to 53%). After etanercept failure, drug continuation of adalimumab was similar to infliximab for patients with non-systemic JIA; anakinra was superior to a second TNF-blocker for systemic JIA. AE rates within first 12 months after initiation were comparable for each course and each biological agent. CONCLUSIONS: Switching to another biological agent is common, especially for systemic JIA patients. A second (and third) agent was less effective than the first. The choice of second biological agent by the physician mainly depends on availability and JIA category.
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Antirreumáticos/administración & dosificación , Antirreumáticos/efectos adversos , Artritis Juvenil/tratamiento farmacológico , Inmunoglobulina G/administración & dosificación , Inmunoglobulina G/efectos adversos , Receptores del Factor de Necrosis Tumoral/administración & dosificación , Sistema de Registros/estadística & datos numéricos , Abatacept , Adalimumab , Adolescente , Anticuerpos Monoclonales/administración & dosificación , Anticuerpos Monoclonales/efectos adversos , Anticuerpos Monoclonales Humanizados/administración & dosificación , Anticuerpos Monoclonales Humanizados/efectos adversos , Artritis Juvenil/epidemiología , Niño , Preescolar , Resistencia a Medicamentos , Etanercept , Femenino , Estudios de Seguimiento , Humanos , Inmunoconjugados/administración & dosificación , Inmunoconjugados/efectos adversos , Infliximab , Proteína Antagonista del Receptor de Interleucina 1/administración & dosificación , Proteína Antagonista del Receptor de Interleucina 1/efectos adversos , Estimación de Kaplan-Meier , Masculino , Países Bajos/epidemiología , Estudios Prospectivos , Resultado del TratamientoRESUMEN
OBJECTIVES: To evaluate differences in baseline characteristics between etanercept- and adalimumab-treated JIA patients and to reveal factors that influence the choice between these TNF inhibitors, which are considered equally effective in the recent ACR recommendations for JIA treatment. METHODS: Biologic-naïve JIA patients with active arthritis who started treatment with adalimumab or etanercept between March 2008 and December 2011 were selected from the Dutch Arthritis and Biologicals in Children register. Baseline characteristics were compared. Focus group interviews with paediatric rheumatologists were performed to evaluate factors determining treatment choices. RESULTS: A total of 193 patients started treatment with etanercept and 21 with adalimumab. Adalimumab-treated patients had longer disease duration prior to the start of biologics (median 5.7 vs 2.0 years) and more often a history of uveitis (71% vs 4%). Etanercept-treated patients had more disability at baseline (median Childhood Health Assessment Questionnaire score 1.1 vs 0.4) and more active arthritis (median number of active joints 6 vs 4). The presence of uveitis was the most important factor directing the choice towards adalimumab. Factors specific for the paediatric population-such as painful adalimumab injections-as well as the physician's familiarity with the drug accounted for the preference for etanercept. CONCLUSION: Although the two TNF inhibitors are considered equally effective, in daily practice etanercept is most often prescribed; adalimumab is mainly preferred when uveitis is present. In choosing the most suitable biologic treatment, paediatric rheumatologists take into account drug and patient factors, considering newly published data and cautiously implementing this into daily care.
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Anticuerpos Monoclonales Humanizados/uso terapéutico , Antirreumáticos/uso terapéutico , Artritis Juvenil/tratamiento farmacológico , Toma de Decisiones , Inmunoglobulina G/uso terapéutico , Pautas de la Práctica en Medicina , Receptores del Factor de Necrosis Tumoral/uso terapéutico , Adalimumab , Adolescente , Niño , Preescolar , Prescripciones de Medicamentos , Etanercept , Femenino , Humanos , Masculino , Sistema de Registros , Índice de Severidad de la Enfermedad , Resultado del TratamientoRESUMEN
OBJECTIVE: Because TNF inhibitors are not approved for persistent oligoarticular JIA (oJIA), although they are used off-label, we evaluated their effectiveness in patients in this category. METHODS: Persistent oJIA patients were selected from the Dutch Arthritis and Biologicals in Children (ABC) register, an ongoing multicentre prospective study that aims to include all Dutch children with JIA using biologic agents. Response was assessed by the JIA core-set disease activity variables and modified Wallace criteria for inactive disease. RESULTS: Until February 2011, 16 persistent oJIA patients (68.8% females) had been included in the register. Median age of onset was 8.4 years [interquartile range (IQR) 2.1-13.5 years]; history of uveitis in 18.8%; ANA-positive 56.3%. All had previously used MTX, and 81.3% had used IA CSs. Median follow-up after the introduction of biologic treatment was 13.7 months (IQR 8.3-16.7 months). Fourteen patients started etanercept and two patients who had active arthritis as well as uveitis started adalimumab. Although patients with persistent oJIA had few affected joints [median of two active joints at the start of biologic (IQR 1-3)], the patient/parent assessments of pain [median visual analogue score (VAS) 51 (IQR 1-64)] and well-being [median VAS 44 (IQR 6-66)] were high. Additionally, their physician evaluated the disease activity as moderately high [median VAS 36 (IQR 4-65)]. After 3 months this decreased to 0 (IQR 0-30) and 63% achieved inactive disease. After 15 months the disease was inactive in 9/10 observed patients. TNF inhibitors were tolerated well. CONCLUSION: TNF blocking agents seem an effective and justifiable option in persistent oJIA when treatment with IA CS injections and MTX has failed.
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Antirreumáticos/uso terapéutico , Artritis Juvenil/tratamiento farmacológico , Factor de Necrosis Tumoral alfa/antagonistas & inhibidores , Adalimumab , Adolescente , Anticuerpos Monoclonales Humanizados/efectos adversos , Anticuerpos Monoclonales Humanizados/uso terapéutico , Antirreumáticos/efectos adversos , Productos Biológicos/uso terapéutico , Niño , Etanercept , Femenino , Estudios de Seguimiento , Humanos , Inmunoglobulina G/efectos adversos , Inmunoglobulina G/uso terapéutico , Masculino , Países Bajos , Dimensión del Dolor , Estudios Prospectivos , Receptores del Factor de Necrosis Tumoral/uso terapéutico , Sistema de Registros , Índice de Severidad de la Enfermedad , Resultado del TratamientoRESUMEN
Although other web-based approaches to assessment of professional behaviour have been studied, no publications studying the potential advantages of a web-based instrument versus a classic, paper-based method have been published to date. This study has two research goals: it focuses on the quantity and quality of comments provided by students and their peers (two researchers independently scoring comments as correct and incorrect in relation to five commonly used feedback rules (and resulting in an aggregated score of the five scores) on the one, and on the feasibility, acceptability and perceived usefulness of the two approaches on the other hand (using a survey). The amount of feedback was significantly higher in the web-based group than in the paper based group for all three categories (dealing with work, others and oneself). Regarding the quality of feedback, the aggregated score for each of the three categories was not significantly different between the two groups, neither for the interim, nor for the final assessment. Some, not statistically significant, but nevertheless noteworthy trends were nevertheless noted. Feedback in the web-based group was more often unrelated to observed behaviour for several categories for both the interim and final assessment. Furthermore, most comments relating to the category 'Dealing with oneself' consisted of descriptions of a student's attendance, thereby neglecting other aspects of personal functioning. The survey identified significant differences between the groups for all questionnaire items regarding feasibility, acceptability and perceived usefulness in favour of the paper-based form. The use of a web-based instrument for professional behaviour assessment yielded a significantly higher number of comments compared to the traditional paper-based assessment. Unfortunately, the quality of the feedback obtained by the web-based instrument as measured by several generally accepted feedback criteria did not parallel this increase.
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Conducta , Retroalimentación , Internet , Aprendizaje Basado en Problemas , Competencia Profesional , Educación de Pregrado en Medicina , Humanos , Países Bajos , Estudiantes de Medicina/psicologíaRESUMEN
AIM: To determine whether analysis of unsolicited healthcare complaints specifically focusing on unprofessional behaviour can provide additional information from the patients' perspective. METHODS: A qualitative study with content analysis of healthcare complaints and associated judgements using complaints filed from 2004 to 2009 at the complaints committee of a tertiary-referral centre. Subsequent comparison of the resulting categories of poor professionalism to categories perceived relevant by physicians in a previous study was performed. RESULTS: 137 complaints (98%) yielded 46 different unprofessional behaviours grouped into 18 categories. The element 'perceived medical complications and error' occurred most commonly (n=77), followed by 'having to wait for care' and 'insufficient or unclear clarification' (n=52, n=48, respectively). The combined non-cognitive elements of professionalism (especially aspects of communication) were far more prominently discussed than cognitive issues (knowledge/skills) related to medical error. Most categories of professionalism elements were considered important by physicians but, nevertheless, were identified in patient complaints analysis. Some issues (eg, 'altruism', 'appearance', 'keeping distance/respecting boundaries with patients') were not perceived as problematic by patients and/or relatives, while mentioned by physicians. Conversely, eight categories of poor professionalism revealed from complaint analysis (eg, 'having to wait for care', 'lack of continuity of care' and 'lack of shared decision making') were not considered essential by physicians. CONCLUSIONS: The vast majority of unprofessional behaviour identified related to non-cognitive, professionalism aspects of care. Complaints pertaining to unsatisfactory communication were especially noticeable. Incongruence is noted between the physicians' and the patients' perception of actual care.
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Competencia Clínica/normas , Errores Médicos/estadística & datos numéricos , Satisfacción del Paciente/estadística & datos numéricos , Relaciones Médico-Paciente , Mala Conducta Profesional/estadística & datos numéricos , Calidad de la Atención de Salud/normas , Competencia Clínica/estadística & datos numéricos , Humanos , Errores Médicos/psicología , Países Bajos , Mala Conducta Profesional/psicología , Centros de Atención TerciariaRESUMEN
OBJECTIVES: To evaluate the effectiveness of tumour necrosis factor (TNF) blockers in juvenile psoriatic arthritis (JPsA). METHODS: The study was a prospective ongoing multicentre, observational study of all Dutch juvenile idiopathic arthritis (JIA) patients using biologicals. The response of arthritis was assessed by American College of Rheumatology (ACR) paediatric response and Wallace inactive disease criteria. The response of psoriatic skin lesions was scored by a 5-point scale. RESULTS: Eighteen JPsA patients (72% female, median age onset 11.1 (range 3.3-14.6) years, 50% psoriatic skin lesions, 39% nail pitting, 22% dactylitis) were studied. The median follow-up time since starting anti-TNFα was 26 (range 3-62) months. Seventeen patients started on etanercept and one started on adalimumab. After 3 months of treatment 83% of the patients achieved ACR30 response, increasing to 100% after 15 months. Inactive disease reached in 67% after 39 months. There was no discontinuation because of inefficacy. Six patients discontinued treatment after a good clinical response. However, five patients flared and restarted treatment, all with a good response. During treatment four patients (two JPsA and two JIA patients with other subtypes) developed de novo psoriasis. In four of the nine patients the pre-existing psoriatic skin lesions improved. CONCLUSION: Anti-TNFα therapy in JPsA seems effective in treating arthritis. However, in most patients the arthritis flared up after treatment discontinuation, emphasising the need to investigate optimal therapy duration. The psoriatic skin lesions did not respond well and four patients developed de novo psoriasis.
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Antirreumáticos/uso terapéutico , Artritis Juvenil/tratamiento farmacológico , Factor de Necrosis Tumoral alfa/antagonistas & inhibidores , Adalimumab , Adolescente , Anticuerpos Monoclonales/uso terapéutico , Anticuerpos Monoclonales Humanizados , Niño , Preescolar , Etanercept , Femenino , Humanos , Inmunoglobulina G/uso terapéutico , Masculino , Estudios Prospectivos , Psoriasis/tratamiento farmacológico , Receptores del Factor de Necrosis Tumoral/uso terapéutico , Índice de Severidad de la Enfermedad , Resultado del TratamientoRESUMEN
OBJECTIVE: To analyse and report the costs and effects of etanercept therapy in patients with JIA. METHODS: Forty-nine JIA patients were evaluated by means of the JIA core set at the start of etanercept and after 3, 15 and 27 months of therapy. At the same time-points, parents of the patients were asked to complete the Health Utility Index Mark 3 (HUI3). Direct medical costs were collected for 1 year before and 27 months after the start of etanercept and compared with gain in utility. RESULTS: Mean total direct medical costs after the start of etanercept were on average 12 478 euros per patient-year compared with 3720 euros before start. The cost analysis showed that three-quarters of total direct medical costs were from etanercept itself. Other direct medical costs, such as costs concerning hospitalization and concomitant medication, decreased compared with the costs in the period before start of etanercept. Especially a great reduction of consultations at the outpatient clinic was seen. Utility was 0.53 before start of etanercept, according to the multi-attribute utility function of the HUI3 on a scale from 0 (dead) to 1 (perfect health). After 27 months, utility was 0.78. In accordance, also all JIA core set response variables improved significantly over 27 months of etanercept treatment. CONCLUSIONS: Although costs of etanercept therapy are substantial, the gain in utility is even more impressive. Considering that these JIA patients were previously refractory to conventional treatment including MTX, and were at risk of long-time disability and pain, costs are justifiable.
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Antirreumáticos/economía , Artritis Juvenil/tratamiento farmacológico , Artritis Juvenil/economía , Costos de los Medicamentos , Inmunoglobulina G/economía , Adolescente , Antirreumáticos/uso terapéutico , Artritis Juvenil/diagnóstico , Niño , Estudios de Cohortes , Costo de Enfermedad , Análisis Costo-Beneficio , Etanercept , Femenino , Costos de la Atención en Salud , Humanos , Inmunoglobulina G/uso terapéutico , Masculino , Países Bajos , Receptores del Factor de Necrosis Tumoral/uso terapéutico , Sistema de RegistrosRESUMEN
CONTEXT: Since the introduction of biologic therapies, the pharmacological treatment approach for juvenile idiopathic arthritis (JIA) has changed substantially, with achievement of inactive disease as a realistic goal. OBJECTIVE: To determine the response to therapy after initiation of etanercept therapy among patients with JIA and to examine the association between baseline factors and response to etanercept treatment. DESIGN, SETTING, AND PATIENTS: The Arthritis and Biologicals in Children Register, an ongoing prospective observational study since 1999, includes all Dutch JIA patients who used biologic agents. All biologically naive patients who started etanercept before October 2009 were included, with follow-up data to January 2011. Among the 262 patients, 185 (71%) were female, 46 (18%) had systemic-onset, and the median age at initiation of etanercept treatment was 12.4 years. MAIN OUTCOME MEASURES: Excellent response (inactive disease or discontinuation earlier due to disease remission), intermediate response (more than 50% improvement from baseline, but no inactive disease), and poor response (less than 50% improvement from baseline or discontinuation earlier due to ineffectiveness or intolerance) evaluated 15 months after initiation of etanercept. RESULTS: At 15 months after treatment initiation, 85 patients (32%) were considered excellent responders; 92 (36%), intermediate responders; and 85 (32%), poor responders. Compared with an intermediate or poor response, an excellent response was associated with lower baseline disability score (range, 0-3 points, with 0 being the best score; adjusted odds ratio [OR] per point increase, 0.49; 95% CI, 0.33-0.74); fewer disease-modifying antirheumatic drugs (DMARD) (including methotrexate) used before initiating etanercept (adjusted OR per DMARD used, 0.64; 95% CI, 0.43-0.95), and younger age at onset (adjusted OR per year increase, 0.92; 95% CI, 0.84-0.99). Compared with an intermediate or excellent response, a poor response was associated with systemic JIA (adjusted OR systemic vs nonsystemic categories, 2.92; 95% CI, 1.26-6.80), and female sex (adjusted OR female vs male, 2.16; 95% CI, 1.12-4.18). Within the first 15 months of etanercept treatment, 119 patients experienced 1 or more infectious, noninfectious, or serious adverse events, including 37 among those with an excellent response, 36 with an intermediate response, and 46 with a poor response. Within the first 15 months of treatment, 61 patients discontinued etanercept treatment, including 4 with an excellent response, 0 with an intermediate response, and 57 with a poor response. In a secondary analysis of 262 patients with a median follow-up of 35.6 months after initiation of etanercept, a range of 37% to 49% of patients reached inactive disease. The mean adherence to etanercept was 49.2 months (95% CI, 46.4-52.0) for patients with an excellent response after 15 months, 47.5 months (95% CI, 44.9-50.1) for patients with an intermediate response, and 17.4 months (95% CI, 13.6-21.2) for patients with a poor response. CONCLUSIONS: Among patients with JIA who initiated treatment with etanercept, one-third achieved an excellent response, one-third an intermediate response, and one-third a poor response to therapy. Achievement of an excellent response was associated with low baseline disability scores, DMARDs used before initiating etanercept, and younger age at onset of JIA. Achievement of a poor treatment response was associated with systemic JIA and female sex.
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Antirreumáticos/uso terapéutico , Artritis Juvenil/tratamiento farmacológico , Inmunoglobulina G/uso terapéutico , Receptores del Factor de Necrosis Tumoral/uso terapéutico , Adolescente , Niño , Preescolar , Etanercept , Femenino , Humanos , Masculino , Países Bajos , Estudios Prospectivos , Sistema de Registros , Índice de Severidad de la Enfermedad , Resultado del TratamientoRESUMEN
INTRODUCTION: Behaviour is visible in real-life events, but also on social media. While some national medical organizations have published social media guidelines, the number of studies on professional social media use in medical education is limited. This study aims to explore social media use among medical students, residents and medical specialists. METHODS: An anonymous, online survey was sent to 3844 medical students at two Dutch medical schools, 828 residents and 426 medical specialists. Quantitative, descriptive data analysis regarding demographic data, yes/no questions and Likert scale questions were performed using SPSS. Qualitative data analysis was performed iteratively, independently by two researchers applying the principles of constant comparison, open and axial coding until consensus was reached. RESULTS: Overall response rate was 24.8%. Facebook was most popular among medical students and residents; LinkedIn was most popular among medical specialists. Personal pictures and/or information about themselves on social media that were perceived as unprofessional were reported by 31.3% of students, 19.7% of residents and 4.1% of medical specialists. Information and pictures related to alcohol abuse, partying, clinical work or of a sexually suggestive character were considered inappropriate. Addressing colleagues about their unprofessional posts was perceived to be mainly dependent on the nature and hierarchy of the interprofessional relation. DISCUSSION: There is a widespread perception that the presence of unprofessional information on social media among the participants and their colleagues is a common occurrence. Medical educators should create awareness of the risks of unprofessional (online) behaviour among healthcare professionals, as well as the necessity and ways of addressing colleagues in case of such lapses.
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Medios de Comunicación Sociales , Estudiantes de Medicina , Humanos , Percepción , Facultades de Medicina , Conducta SocialRESUMEN
Given the changes in society we are experiencing, the increasing focus on patient-centred care and acknowledgement that medical education including professionalism issues needs to continue not only in the residency programmes but also throughout the doctors career, is not surprising. Although most of the literature on professionalism pertains to learning and teaching professionalism issues, addressing unprofessional behaviour and related patient safety issues forms an alternative or perhaps complementary approach. This article describes the possibility of selecting applicants for a medical school based on personality characteristics, the attention to professional lapses in contemporary undergraduate training, as well as the magnitude, aetiology, surveillance and methods of dealing with reports of unprofessional behaviour in postgraduate education and CME.
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Educación de Pregrado en Medicina , Relaciones Interprofesionales , Mala Conducta Profesional , Denuncia de Irregularidades , Curriculum , Educación de Postgrado en Medicina , Humanos , Inventario de Personalidad , Criterios de Admisión EscolarRESUMEN
To know what is going on in physicians' surgery hours, assessment of practice performance is important with regard to quality assessment activities. The incognito standardized patient (SP) method is a powerful method to assess this. However, until now no reports have been published about specialists' performance using this method. In this study, 27 rheumatologists in 16 hospitals were each visited by eight incognito SPs to study the feasibility of sending incognito SPs to specialists working in different hospitals, of follow-up consultations and of simulating additional investigations. SPs recorded performance on case-specific checklists. The different steps needed for these visits are described in detail. A total of 136 first and 32 follow-up visits took place. SPs remained undetected in 98% of the visits. It is concluded that this SP method is a feasible one, however, only to be used for very specific purposes. Use of incognito SPs for larger scale projects is not recommended.
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PURPOSE: To compare physical activity levels of adolescents and young adults with chronic pain with that of healthy participants. To investigate the impact of pain intensity, pain catastrophizing and depressive symptoms on the level of physical activity and disability of adolescents and young adults with chronic pain. METHODS: Case-control study. Levels of physical activity and disability of adolescents and young adults with chronic non-specific musculoskeletal pain (n = 42) were compared with that of healthy participants (n = 42). For participants with chronic pain, measures of pain catastrophizing, pain intensity and depression were examined for their ability to explain levels of physical activity and disability. STATISTICS: multivariate regression analysis, Mann-Whitney testing, Pearson correlation analysis. RESULTS: Participants with chronic pain were as active as healthy participants (p = 0.22) (confidence interval [CI] 95%), although they seemed to be less active in sports and heavy-loaded activities. Pain intensity (ß = 0.32) and depressive symptoms (ß = 0.36) contributed significantly to disability (CI 95%). There was no significant association between physical activity and disability (CI 95%). CONCLUSIONS: Chronic non-specific musculoskeletal pain is a disabling condition for adolescents and young adults. The level of physical activity in the daily life of adolescents and young adults with chronic pain is comparable to that of healthy counterparts, although the performance of sports and heavy-loaded activities seems diminished. Both pain intensity and depressive symptoms are disabling. [ IMPLICATIONS FOR REHABILITATION: ⢠Chronic non-specific musculoskeletal pain is a disabling condition for adolescents and young adults.⢠Pain intensity and depressive symptoms predict disability.⢠The effect of pain on the physical-activity level of adolescents and young adults with chronic non-specific musculoskeletal pain seems to be small.⢠Assessment and improvement of emotional well-being may improve treatment programs for adolescents and young adults with chronic non-specific musculoskeletal pain.]
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Catastrofización , Depresión/etiología , Personas con Discapacidad/psicología , Dolor Musculoesquelético/psicología , Actividades Cotidianas , Adolescente , Estudios de Casos y Controles , Dolor Crónico , Estudios Transversales , Depresión/psicología , Evaluación de la Discapacidad , Femenino , Humanos , Masculino , Actividad Motora , Dimensión del Dolor , Análisis de Regresión , Perfil de Impacto de Enfermedad , Factores Socioeconómicos , Encuestas y Cuestionarios , Adulto JovenRESUMEN
OBJECTIVE: To evaluate the effectiveness and safety of biological agents in children with enthesitis-related arthritis (ERA). METHODS: All patients with ERA in whom a biological agent was initiated between 1999 and 2010 were selected from the Dutch Arthritis and Biologicals in Children (ABC) register. In this ongoing multicenter observational register, data on the course of the disease and medication use are retrieved prospectively at the start of the biological agent, after 3 months, and yearly thereafter. Inactive disease was assessed in accordance with the Wallace criteria. RESULTS: Twenty-two patients with ERA started taking 1 or more biological agents: 20 took etanercept, 2 took adalimumab (1 switched from etanercept to adalimumab), and 2 took infliximab (1 switched from etanercept to infliximab). Characteristics: 77% were male, 77% had enthesitis, 68% were HLA-B27-positive. The median age of onset was 10.4 (IQR 9.4-12.0) years; median followup from the start of the biological agent was 1.2 (IQR 0.5-2.4) years. Intention-to-treat analysis shows that inactive disease was achieved in 7 of 22 patients (32%) after 3 months, 5 of 13 patients (38%) after 15 months, and 5 of 8 patients (63%) after 27 months of treatment. Two patients discontinued etanercept because of ineffectiveness, and switched to adalimumab (inactive disease achieved) or infliximab (decline in joints with arthritis after 3 months of treatment). One patient discontinued etanercept because of remission, but had flare and restarted treatment, with good clinical response. No serious adverse events occurred. CONCLUSION: Tumor necrosis factor (TNF)-blocking agents seem effective and safe for patients with ERA that was previously unresponsive to 1 or more DMARD. However, a sustained disease-free state could not be achieved, and none discontinued TNF-blocking agents successfully.
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Anticuerpos Monoclonales Humanizados/uso terapéutico , Anticuerpos Monoclonales/uso terapéutico , Antirreumáticos/uso terapéutico , Artritis Juvenil/tratamiento farmacológico , Inmunoglobulina G/uso terapéutico , Receptores del Factor de Necrosis Tumoral/uso terapéutico , Factor de Necrosis Tumoral alfa/antagonistas & inhibidores , Adalimumab , Adolescente , Edad de Inicio , Anticuerpos Monoclonales/efectos adversos , Anticuerpos Monoclonales Humanizados/efectos adversos , Antirreumáticos/efectos adversos , Niño , Preescolar , Etanercept , Femenino , Humanos , Inmunoglobulina G/efectos adversos , Lactante , Infliximab , Masculino , Países Bajos , Estudios Prospectivos , Sistema de Registros , Resultado del TratamientoRESUMEN
INTRODUCTION: The emphasis on the importance of professionalism in a recent CoBaTrICE-IT paper was impressive. However, insight into the elements of professionalism as perceived relevant for intensivists from the fellows' view, and how these are taught and learned, is limited. OBJECTIVES AND METHODS: A nationwide study was performed in 2007-2008. All ICM fellows (n = 90) were sent a questionnaire containing the following questions regarding training in professionalism (7-point Likert scale (1 = very inadequate, 7 = very adequate)): which are the elements perceived to be important in intensivists'' daily practice (38 items, cat. I)? Which methods of learning and teaching are recognised (16 items, cat. II)? Which methods of teaching and learning are considered especially useful (16 items, cat. III)? Finally, the perceived quantity and quality of formal and informal learning methods, as well as the responsible organisational body was studied. Data were analysed using SPSS 15.0. RESULTS: Response was 75.5 % (n = 68), mean age 34 years. Regarding Elements, scores on virtually all items were high. The factor 'striving for excellence' explained half the variance. Two other aspects, 'Teamwork' and 'Dealing with ethical dilemmas', were identified. Regarding Methods, three dimensions, 'formal curriculum'', 'private and academic experiences' and 'role modelling', proved important. The factor 'formal curriculum' explained most of the variance. Regarding Usefulness the same factors, now mainly explained by the factor Private and academic experiences, emerged with variance. In both categories the items 'observations in daily practice' and 'watching television programmes like ER and House' were the highest- and lowest-scoring items (5.99 and 5.81, and 2.69 and 2.49, respectively). Mean scores regarding the quantity of formal and informal teaching were 4.06 and 4.58 (range 1.841 and 1.519). For the quality of teaching, the figures were 4.22 and 4.52 (range 1.659 and 1.560, respectively). 54 suggestions for improvement of teaching were documented. The need for some form of formal teaching of professionalism aspects as well as for feedback was most frequently mentioned (n = 19 and 16). The local training centres are considered and should remain pivotal for teaching professionalism issues (n = 17 and 28). CONCLUSIONS: Almost all elements of professionalism were considered relevant to intensivists' daily practice. Although formal teaching methods regarding professionalism aspects are easily recognised in daily practice, learning by personal experiences and informal ways quantitatively plays a more important, and more valued role. Qualitative comments, nevertheless, stress the need for providing and receiving (solicited and unsolicited) feedback, thereby requesting expansion of formal teaching methods. The local training centres (should continue to) play a major role in teaching professionalism, although an additional role for the (inter)national intensive care organisations remains.
Asunto(s)
Competencia Clínica , Cuidados Críticos , Aprendizaje , Adulto , Curriculum , Humanos , Internado y Residencia , Encuestas y Cuestionarios , Recursos HumanosRESUMEN
OBJECTIVE: To evaluate response in patients with juvenile idiopathic arthritis (JIA) who failed to meet response criteria after 3 months of etanercept treatment. METHODS: This was a prospective ongoing multicenter observational study of all Dutch patients with JIA using etanercept. Response according to American College of Rheumatology Pediatric 30 criteria was assessed at study start and at 3 and 15 months. RESULTS: In total we studied 179 patients of median age 5.8 years at disease onset; 70% were female. Thirty-four patients did not respond after 3 months, of which 20 continued etanercept and 11 achieved response thereafter. CONCLUSION: The delayed clinically relevant response in a substantial proportion of patients who initially did not respond justifies the consideration of continuing therapy to at least 6 months.
Asunto(s)
Antirreumáticos/uso terapéutico , Artritis Juvenil/tratamiento farmacológico , Inmunoglobulina G/uso terapéutico , Receptores del Factor de Necrosis Tumoral/uso terapéutico , Niño , Preescolar , Etanercept , Femenino , Humanos , Masculino , Países Bajos , Estudios Prospectivos , Factores de Tiempo , Resultado del TratamientoRESUMEN
There is general agreement that professionalism and professional behaviour should be (formatively and summatively) assessed, but consensus on how this should be done is still lacking. After discussing some of the remaining issues and questions regarding professionalism assessment, this article discusses the importance of qualitative comments to the assessment of professional behaviour, focuses on the currently most frequently used tools, as well as stresses the need for triangulation (combining) of these tools.
Asunto(s)
Evaluación Educacional/normas , Competencia Profesional/normas , Docentes Médicos , Humanos , Revisión por Pares/normas , Relaciones Médico-Paciente , Programas de Autoevaluación/normas , Estudiantes de Medicina , Análisis y Desempeño de TareasRESUMEN
Given the changes in society we are experiencing, the increasing focus on patient centred care and acknowledgment that medical education needs to continue not only in the residency programmes but throughout the doctors career, is not surprising. This article describes the attention currently paid to professionalism in the residency programmes, differences in perception of professionalism between patients, faculty, students and residents, differences in professionalism issues in the different educational phases, as well as their consequences for training and assessment regarding professionalism. Continuous medical education in professionalism is thereafter briefly discussed.
Asunto(s)
Educación Médica , Competencia Profesional , Actitud del Personal de Salud , Atención a la Salud/tendencias , Educación Médica/normas , Educación Médica Continua , Educación de Postgrado en Medicina , Humanos , Internado y Residencia , Admisión y Programación de Personal , Rol del Médico , Competencia Profesional/normas , Estudiantes de MedicinaRESUMEN
A 64-year-old woman developed slowly expanding asymptomatic red bumps on the hands and in the face since 1 year. Histopathological examination showed mononucleated and multinucleated giant cells with a characteristic "ground glass" appearance. Based on the clinical and histopathological findings, we made the diagnosis of multicentric reticulohistiocytosis (MRH). This rare variant of histiocytosis was described for the first time in 1950. Clinically, the disorder is characterized by papulonodular cutaneous lesions, and a severe and often destructive arthropathy. The reticulohistiocytoses are a rare group of closely related non-Langerhans cell histiocytosis that most commonly manifest in adults. Because MRH can be associated with an underlying malignancies, and an interdisciplinary examination and regimen of these patients is advisable.