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OBJECTIVES: Dermatomyositis (DM) and juvenile dermatomyositis (JDM) are idiopathic inflammatory myopathies, which can be resistant and unresponsive to initial treatments, leading to severe complications and impaired quality of life. There are few randomised trials in dermatomyositis and the outcomes reported may not be consistent, which can limit decision-making. The aim of this study is to assess the scope and consistency of outcomes reported in randomised trials in dermatomyositis. METHODS: MEDLINE, Embase, PsycINFO and clinicaltrials.gov were searched from 1993-2020 for randomised trials in children and adults with dermatomyositis. The frequency and characteristics of the outcomes reported were analysed and classified. RESULTS: 20 trials were included. Across these trials, a total of 743 outcome measures were reported, which were grouped into 34 outcome domains; of which 17 were clinical, 13 were surrogate/biochemical, and 4 were patient-reported outcomes. The top five most frequently reported outcome domains were muscle inflammation (15 trials, 46 outcome measures), physical function (14 trials, 16 outcome measures), muscle strength (13 trials, 30 outcome measures), global health (12 trials, 33 outcome measures) and immunologic marker (11 trials, 91 outcomes). CONCLUSIONS: The majority of outcomes reported in trials in people with dermatomyositis and JDM are clinical and surrogate outcomes rather than patient-reported outcomes. The outcomes reported are very inconsistent across trials, with wide heterogeneity in the measures used. Standardised reporting of critically important outcomes is needed to strengthen the value of trials for decision-making.
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Dermatomiositis , Adulto , Niño , Dermatomiositis/diagnóstico , Dermatomiositis/terapia , Humanos , Evaluación de Resultado en la Atención de Salud , Medición de Resultados Informados por el Paciente , Calidad de Vida , Ensayos Clínicos Controlados Aleatorios como AsuntoRESUMEN
VEXAS is a newly recognised adult-onset autoinflammatory syndrome resulting from a somatic mutation in the UBA1 gene. Herein, we present three cases of VEXAS syndrome in Sydney, Australia, that capture key clinical features and the refractory nature of the condition. They highlight the importance of multidisciplinary collaboration for early diagnosis and the need for new therapeutic options.
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Investigación , Enzimas Activadoras de Ubiquitina , Adulto , Australia , Humanos , Mutación , Síndrome , Enzimas Activadoras de Ubiquitina/genéticaRESUMEN
OBJECTIVE: Decision-making regarding medications to manage psoriatic arthritis (PsA) is complex because of multiple disease manifestations and comorbidities. Fear of side effects from systemic medications and misalignment in priorities between patients with PsA and rheumatologists makes shared decision-making challenging. We aimed to describe the perspectives of patients with PsA on shared decision-making regarding medication taking. METHODS: Face-to-face semistructured interviews were conducted with 25 adult patients with PsA in Australia. Transcripts were thematically analyzed. RESULTS: Five themes were identified: lacking agency in decision-making (denied choice, knowledge asymmetry, desperation and necessity, restricted by unfair eligibility criteria, automated approach); overwhelmed by potential harms (daunted by aggressive therapy, anticipating lifestyle disruption from side effects, jeopardizing fertility and pregnancy, avoiding relapse); gaining confidence (discernible benefit in function and mental health, sharpening knowledge over time, expertise of family and peers, empowered by information); opting for alternatives (pursuing normality, suspicion of over-medicalization, seeking comprehensive solutions); and developing trust and fortifying collaboration (assurance through a personable approach, seeking consistency, supported in decisional power, resolution through respectful negotiation). CONCLUSION: Patients with PsA lack agency in making treatment decisions and are overwhelmed by the potential harms of systemic medication. Improving knowledge and trust with medical teams in a supportive and collaborative environment, and strategies for managing risks and side effects may improve decision-making about pharmacologic management of PsA.
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Artritis Psoriásica , Toma de Decisiones , Adulto , Embarazo , Femenino , Humanos , Artritis Psoriásica/diagnóstico , Artritis Psoriásica/tratamiento farmacológico , Toma de Decisiones Conjunta , Pacientes , Investigación CualitativaRESUMEN
AIM: A treat-to-target strategy is recommended for management of psoriatic arthritis (PsA), although there is lack of agreement regarding the best measure of disease activity to target. Physician assessments included in traditional indices can be complex and time consuming to complete and cannot be readily conducted by telehealth. This study compares the routine assessment of patient index data 3 (RAPID3), an efficient tool comprising patient self-assessment, with traditional clinician-led composite measures in the PsA clinic setting. METHODS: Data were collected prospectively from July 2016 to March 2020 in 2 dedicated PsA clinics in Sydney, Australia. A receiver operating characteristic (ROC) curve was created for comparison of RAPID3 score with composite scores minimal disease activity (MDA), very low disease activity (VLDA) and disease activity in psoriatic arthritis (DAPSA) in low disease activity or remission. RESULTS: Ninety-three patients had simultaneous collection of RAPID3 and MDA measures. Mean (SD) age was 49.9 (13.5) years, 50.5% were male and 23 (24.7%) had erosive disease at baseline. RAPID3 scores ≤3.2 and ≤2.7 (range 0-30) had high sensitivity and specificity for VLDA and DAPSA remission respectively, with ROC curve area under the curve (95% CI) of 0.94 (0.91-0.97) and 0.96 (0.93-0.99). CONCLUSION: RAPID3 has good agreement with physician-led composite scores of MDA, VLDA and DAPSA, and provides a viable alternative to composite scores. This is particularly helpful in settings that do not allow for clinical examination, for example telehealth.
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Antirreumáticos , Artritis Psoriásica , Adulto , Antirreumáticos/uso terapéutico , Artritis Psoriásica/diagnóstico , Artritis Psoriásica/tratamiento farmacológico , Femenino , Humanos , Masculino , Persona de Mediana Edad , Medición de Resultados Informados por el Paciente , Inducción de Remisión , Índice de Severidad de la EnfermedadRESUMEN
OBJECTIVE: We aimed to assess patient preferences for the characteristics and outcomes of biologic and targeted synthetic disease-modifying antirheumatic drugs (DMARDs) to manage psoriatic arthritis. METHODS: We conducted a discrete choice experiment in patients with psoriatic arthritis from 3 rheumatology centers in Sydney, Australia. We assessed preferences for different attributes of biologic medications. The route and frequency of medications had a range of 5 levels, and the following 7 attributes had a range of 3 levels: the ability to attend to normal activities, improvements in joint pain, enthesitis and skin disease, chance of disease remission, risk of infection, and risk of severe adverse events. Multinomial logit models including a latent class model were used to calculate preferences. RESULTS: Of the 150 participants, 58.3% were female, with a median age of 53.5 years. The attributes in order of preference using the ß coefficient in absolute values (95% confidence interval [95% CI]) were as follows: oral route compared to subcutaneous and intravenous routes (ß coefficient 1.00 [fixed parameter]), avoiding severe side effects (ß coefficient 0.72 [95% CI 0.50, 0.95]), increasing ability to attend to normal activities (ß coefficient 0.66 [95% CI 0.36, 0.96]), avoiding infections (ß coefficient 0.38 [95% CI 0.23, 0.53]), improvement in enthesitis pain (ß coefficient 0.28 [95% CI 0.20, 0.36]), improvement in psoriasis (ß coefficient 0.28 [95% CI 0.20, 0.36]), increasing chance of remission (ß coefficient 0.27 [95% CI 0.19, 0.36]), and improvement in joint pain (ß coefficient 0.26 [95% CI 0.00, 0.52]). CONCLUSION: When choosing biologic medications, patients with psoriatic arthritis preferred oral medications. Patients prioritized avoiding severe complications, maintaining the ability to attend to work and normal activities, and avoiding infection over clinical measures of efficacy.
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Antirreumáticos , Artritis Psoriásica , Productos Biológicos , Psoriasis , Antirreumáticos/efectos adversos , Artralgia/tratamiento farmacológico , Artritis Psoriásica/diagnóstico , Artritis Psoriásica/tratamiento farmacológico , Productos Biológicos/efectos adversos , Femenino , Humanos , Masculino , Persona de Mediana Edad , Psoriasis/tratamiento farmacológicoRESUMEN
While patient-centered care is widely advocated in the management of rheumatic diseases, it can be challenging to implement, particularly for patients with complex systemic conditions. Patient-centered care involves identifying and integrating the patient's experiences, attitudes, and preferences in decision-making. Qualitative research is used to describe patient perspectives and priorities that may not always be expressed in clinical settings. Systematic reviews of qualitative studies can provide new and more comprehensive evidence of patients' beliefs and priorities across different populations and healthcare settings and are increasingly being reported across medical specialties, including rheumatology. In rheumatology, they have been used to examine topics including medication-taking and adherence, coping with systemic sclerosis and conservative management and exercise in osteoarthritis. By referencing recent examples of systematic qualitative reviews in the rheumatology literature, this article will outline the methodology and methods used, and provide an approach to guide the appraisal of reviews. We aim to give the reader a practical understanding of systematic reviews of qualitative literature and elucidate how knowledge gained from such reviews can be applied to improve the care of patients with rheumatic conditions.
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Medicina Basada en la Evidencia , Investigación Cualitativa , Enfermedades Reumáticas/terapia , Reumatología , Revisiones Sistemáticas como Asunto , Investigación sobre Servicios de Salud , Humanos , Atención Dirigida al Paciente , Proyectos de Investigación , Enfermedades Reumáticas/diagnósticoRESUMEN
Patient-centered care is widely advocated in rheumatology. This involves collaboration among patients, caregivers, and health professionals and is particularly important in chronic rheumatic conditions because the disease and treatment can impair patients' health and well-being. Qualitative research can systematically generate insights about people's experiences, beliefs, and attitudes, which patients may not always express in clinical settings. These insights can address complex and challenging areas in rheumatology, such as treatment adherence and transition to adult healthcare services. Despite this, qualitative research comprises 1% of studies published in top-tier rheumatology journals. A better understanding about the effect and role, methods, and rigor of qualitative research is needed. This overview highlights the recent contributions of qualitative research in rheumatology, summarizes the common approaches and methods used, and outlines the key principles to guide appraisal of qualitative studies.
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Reumatología , Adulto , Personal de Salud , Humanos , Políticas , Investigación CualitativaRESUMEN
OBJECTIVE: Shared care between rheumatologists and dermatologists is advocated for patients with psoriasis and psoriatic arthritis, but care provided by rheumatologists and dermatologists is often siloed, leading to inconsistencies in patient care and outcomes. This study aimed to describe rheumatologists' and dermatologists' perspectives on shared care. METHODS: Face-to-face semi-structured interviews were conducted with 15 rheumatologists and 12 dermatologists across 27 centers in Australia. Transcripts were thematically analyzed. RESULTS: Five themes were identified: uncertainties in disciplinary tensions (lacking expertise to make diagnosis, hesitation managing outside of scope, doubting screening tools, defaulting to own disciplinary priorities, hampered by lack of evidence), working in fragmented care (frustration with working in silos, striving to coordinate with primary care, persevering despite inequities in access to care, overwhelmed by managing comorbidities, under-resourced for complexity), building trusting relationships (establishing a culture of collaboration, seeking reliable cross-specialty help, depending on unique skills), prioritizing efficiency (minimizing burden for patients, avoiding resource overuse, deferring to pragmatic decisions), and strengthened by integrated care models (improving the timeliness and accuracy of care, centering on patient goals and understanding, enhancing cross-specialty partnerships, providing opportunities for education and training). CONCLUSIONS: Rheumatologists and dermatologists endeavor to provide comprehensive care to their patients in disjointed healthcare settings but are hampered by a lack of training and a sense of feeling overburdened in the management of comorbidities. Interdisciplinary models are perceived to improve the care of patients but are limited by financial barriers to implementation and concerns about wasting health resources and improperly burdening patients. Key Points ⢠Rheumatologists and dermatologists perceive that shared care models improve the care for their patients with psoriatic arthritis and psoriasis by improving the timeliness and accuracy of management, making the patient the center of care, and enhancing shared care relationships between specialties. ⢠Screening tools to detect psoriatic arthritis may be under-utilized by dermatologists due to doubt about the accuracy of instruments and competing priorities in time-limited consultations. ⢠Management of comorbid disease is challenging for rheumatologists and dermatologists due to a need to prioritize their specialty area and a sense of feeling overburdened while working in fragmented healthcare systems.
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Artritis Psoriásica , Dermatología , Psoriasis , Reumatología , Artritis Psoriásica/diagnóstico , Artritis Psoriásica/terapia , Australia , Humanos , Psoriasis/terapiaRESUMEN
OBJECTIVE: The core outcome set for trials in systemic sclerosis (SSc) was developed in 2008 and comprises 11 domains and 31 measures, leading to the development of the Combined Response Index in Diffuse Cutaneous Systemic Sclerosis (CRISS). We aimed to assess the scope and consistency of outcomes reported in trials of SSc and the uptake of this core set and the CRISS. METHODS: Medline, the Cochrane Central Register of Controlled Trials, Embase, and ClinicalTrials.gov were searched to identify randomized trials published from January 1, 2000 to April 29, 2018 in adults with limited or diffuse SSc. Outcomes and measures were recorded for each trial, classified into domains and the frequency of outcomes before after publication of the publication of the core set calculated. RESULTS: From 152 trials, 4,193 outcomes were classified into 84 domains. The 3 most common domains were health-related quality of life (HRQoL) and function (59%, 130 measures), skin (47%, 59 measures), and pulmonary (45%, 168 measures). After the publication of the core outcome set, no trial reported the complete core set with adherence to each of the 11 domains, ranging from 6.1% to 54.4% and adherence to each of the 31 measures ranging from 0% to 48.1%. The 5 measures required for the CRISS were reported completely in 11% of trials. CONCLUSION: Despite recognition that uniform acquisition and reporting of outcomes would enable a better evaluation of proposed SSc therapeutics, the outcome domains and measures reported in randomized trials in SSc remain very inconsistent, with little impact of the core outcome set.
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Evaluación de Resultado en la Atención de Salud , Esclerodermia Sistémica , Humanos , Ensayos Clínicos Controlados Aleatorios como AsuntoRESUMEN
OBJECTIVE: To describe the range and depth of perspectives and experiences of patients with psoriasis and psoriatic arthritis to inform gaps in patient-centered care. METHODS: We searched MEDLINE, Embase, PsycINFO, and CINAHL to April 2018. Thematic synthesis was used to analyze the findings. RESULTS: We included 56 studies involving 1,484 adult patients with psoriasis (n = 1,147) and psoriatic arthritis (n = 337). Six themes (and subthemes) were identified: suffering uncontrollable and ongoing upheaval (dictating life choices and course, disrupting family and social roles, limited by debilitating symptoms, unstoppable and far-reaching fatigue), weighed down by mental load (anxiety provoked by the volatility of symptoms, dreading deterioration, struggling with unrecognized distress, helpless and nihilistic), harboring shame and judgement (marked as unhygienic and contagious, rejected and isolated, hiding away and resenting own appearance, pain and embarrassment in intimacy), demoralized by inadequacies and burden of therapy (disappointed by unmet expectations of treatment benefit, daily drudgery, deterred by unpalatable or inconvenient treatments, disempowered by lack of personalized care), gaining control (making sense of the condition, accepting a new health status, regaining independence and normality, attuning to the body), and making confident treatment decisions (trading off perceptible benefits against safety and convenience, relying on family input, seeking empowering and reassuring relationships). CONCLUSION: Patients with psoriasis and psoriatic arthritis contend with disruption in their functioning, roles, and life course and have unmet expectations about treatment. Enhanced therapeutic relationships, addressing treatment expectations and supporting psychosocial needs may improve satisfaction and outcomes.
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Artritis Psoriásica/psicología , Costo de Enfermedad , Conocimientos, Actitudes y Práctica en Salud , Pacientes/psicología , Psoriasis/psicología , Adaptación Psicológica , Adolescente , Adulto , Anciano , Anciano de 80 o más Años , Artritis Psoriásica/diagnóstico , Artritis Psoriásica/terapia , Emociones , Femenino , Estado de Salud , Humanos , Masculino , Persona de Mediana Edad , Satisfacción del Paciente , Psoriasis/diagnóstico , Psoriasis/terapia , Investigación Cualitativa , Calidad de Vida , Adulto JovenRESUMEN
OBJECTIVE: Nonadherence to medications is common in rheumatic conditions and associated with increased morbidity. Heterogeneous outcome reporting by researchers compromises the synthesis of evidence of interventions targeting adherence. We aimed to assess the scope of outcomes in interventional studies of medication adherence. METHODS: We searched electronic databases to February 2019 for published randomized controlled trials and observational studies of interventions with the primary outcome of medication adherence including adults with any rheumatic condition, written in English. We extracted and analyzed all outcome domains and adherence measures with prespecified extraction and analysis protocols. RESULTS: Overall, 53 studies reported 71 outcome domains classified into adherence (1 domain), health outcomes (38 domains), and adherence-related factors (e.g., medication knowledge; 32 domains). We subdivided adherence into 3 phases: initiation (n = 13 studies, 25%), implementation (n = 32, 60%), persistence (n = 27, 51%), and phase unclear (n = 20, 38%). Thirty-seven different instruments reported adherence in 115 unique ways (this includes different adherence definitions and calculations, metric, and method of aggregation). Forty-one studies (77%) reported health outcomes. The most frequently reported were medication adverse events (n = 24, 45%), disease activity (n = 11, 21%), bone turnover markers/physical function/quality of life (each n = 10, 19%). Thirty-three studies (62%) reported adherence-related factors. The most frequently reported were medication beliefs (n = 8, 15%), illness perception/medication satisfaction/satisfaction with medication information (each n = 5, 9%), condition knowledge/medication knowledge/trust in doctor (each n = 3, 6%). CONCLUSION: The outcome domains and adherence measures in interventional studies targeting adherence are heterogeneous. Consensus on relevant outcomes will improve the comparison of different strategies to support medication adherence in rheumatology.
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Calidad de Vida , Enfermedades Reumáticas , Adulto , Humanos , Cumplimiento de la Medicación , Proyectos de Investigación , Enfermedades Reumáticas/tratamiento farmacológicoRESUMEN
OBJECTIVE: This study aimed to identify and prioritize factors important to patients and caregivers with regard to medication adherence in gout, osteoporosis (OP), and rheumatoid arthritis (RA) and to describe the reasons for their decisions. METHODS: Patients with gout, OP, and RA and their caregivers, purposively sampled from 5 rheumatology clinics in Australia, identified and ranked factors that they considered important for medication adherence using nominal group technique and discussed their decisions. An importance score (IS; scale 0-1) was calculated, and qualitative data were analyzed thematically. RESULTS: From 14 focus groups, 82 participants (67 patients and 15 caregivers) identified 49 factors. The top 5 factors based on the ranking of all participants were trust in doctor (IS 0.46), medication effectiveness (IS 0.31), doctor's knowledge (IS 0.25), side effects (IS 0.23), and medication-taking routine (IS 0.13). The order of the ranking varied by participant groupings, with patients ranking "trust in doctor" the highest, while caregivers ranked "side effects" the highest. The 5 themes reflecting the reasons for factors influencing adherence were as follows: motivation and certainty in supportive individualized care; living well and restoring function; fear of toxicity and cumulative harm; seeking control and involvement; and unnecessarily difficult and inaccessible. CONCLUSION: Factors related to the doctor, medication properties, and patients' medication knowledge and routine were important for adherence. Strengthening doctor-patient trust and partnership, managing side effects, and empowering patients with knowledge and skills for taking medication could enhance medication adherence in patients with rheumatic conditions.
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Artritis Reumatoide/tratamiento farmacológico , Gota/tratamiento farmacológico , Cumplimiento de la Medicación/psicología , Osteoporosis/tratamiento farmacológico , Adulto , Anciano , Anciano de 80 o más Años , Cuidadores/psicología , Femenino , Humanos , Persona de Mediana Edad , ReumatologíaRESUMEN
OBJECTIVE: Nonadherence to disease-modifying antirheumatic drugs (DMARDS) in rheumatoid arthritis (RA) and spondyloarthritis (SpA) results in increased disease activity and symptoms and poorer quality of life. We aimed to describe patients' attitudes and experiences of DMARDs in RA and SpA to inform strategies to improve medication adherence. METHODS: Databases (MEDLINE, Embase, PsycINFO, and CINAHL) were searched to January 2016. Thematic synthesis was used to analyze the findings. RESULTS: From 56 studies involving 1,383 adult patients (RA [n = 1,149], SpA [n = 191], not specified [n = 43]), we identified 6 themes (with subthemes): intensifying disease identity (severity of sudden pharmacotherapy, signifying deteriorating health, daunting lifelong therapy), distressing uncertainties and consequences (poisoning the body, doubting efficacy, conflicting and confusing advice, prognostic uncertainty with changing treatment regimens), powerful social influences (swayed by others' experiences, partnering with physicians, maintaining roles, confidence in comprehensive and ongoing care, valuing peer support), privilege and right of access to biologic agents (expensive medications must be better, right to receive a biologic agent, fearing dispossession), maintaining control (complete ownership of decision, taking extreme risks, minimizing lifestyle intrusion), and negotiating treatment expectations (miraculous recovery, mediocre benefit, reaching the end of the line). CONCLUSION: Patients perceive DMARDs as strong medications with alarming side effects that intensify their disease identity. Trust and confidence in medical care, positive experiences with DMARDS among other patients, and an expectation that medications will help maintain participation in life can motivate patients to use DMARDs. Creating a supportive environment for patients to voice their concerns may improve treatment satisfaction, adherence, and health outcomes.
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Antirreumáticos/uso terapéutico , Artritis Reumatoide/tratamiento farmacológico , Conocimientos, Actitudes y Práctica en Salud , Satisfacción del Paciente , Espondiloartritis/tratamiento farmacológico , Adulto , Anciano , Anciano de 80 o más Años , Antirreumáticos/efectos adversos , Artritis Reumatoide/diagnóstico , Artritis Reumatoide/fisiopatología , Artritis Reumatoide/psicología , Costo de Enfermedad , Femenino , Humanos , Conducta de Enfermedad , Masculino , Cumplimiento de la Medicación , Persona de Mediana Edad , Investigación Cualitativa , Factores de Riesgo , Índice de Severidad de la Enfermedad , Espondiloartritis/diagnóstico , Espondiloartritis/fisiopatología , Espondiloartritis/psicología , Factores de Tiempo , Resultado del TratamientoRESUMEN
OBJECTIVE: Systemic lupus erythematosus (SLE) is a complex autoimmune disease that can affect multiple organ systems, with specialists from many disciplines often involved, which may lead to inconsistent care. We aimed to describe the attitudes and perspectives of specialists from different medical disciplines on the management of people with SLE. METHODS: Face-to-face semistructured interviews were conducted with rheumatologists (n = 16), nephrologists (n = 16), and immunologists (n = 11) providing care to adults with SLE from 19 centers across Australia in 2015. All interviews were transcribed and analyzed thematically. RESULTS: Five themes were identified: uncertainties in judgments (hampered by unknown and unclear etiology, inapplicable evidence, comprehending information dispersion), reflexive responses (anchoring to specialty training, anticipating outcomes, avoiding disaster, empathy for the vulnerable), overarching duty to patients (achieving patient priorities, maximizing adherence, controlling the disease, providing legitimate information, having adequate and relevant expertise), safeguarding professional opportunities (diversifying clinical skills, protecting colleagues' interests), and optimizing access to treatment (capitalizing on multidisciplinary care, acquiring breakthrough therapies). CONCLUSION: Specialists strive to deliver evidence-informed patient-centered care, but recognize that they are anchored by their training. To overcome uncertainties in clinical management due to lack of high-quality evidence and specialty silo structures, specialists translated evidence from other disease settings and collaborated with other specialists in routine care. Developing robust evidence, tools to support evidence-informed decisions, and multidisciplinary shared-care pathways may improve the management of people with this complex disease.
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Manejo de la Enfermedad , Lupus Eritematoso Sistémico/terapia , Nefrólogos/psicología , Reumatólogos/psicología , Adulto , Anciano , Femenino , Humanos , Entrevistas como Asunto , Masculino , Persona de Mediana Edad , Rol del Médico , IncertidumbreRESUMEN
BACKGROUND: Over the last 20 years, there have been marked improvements in the availability of effective medications for rheumatic conditions such as gout, osteoporosis and rheumatoid arthritis (RA), which have led to a reduction in disease flares and the risk of re-fracture in osteoporosis, and the slowing of disease progression in RA. However, medication adherence remains suboptimal, as treatment regimens can be complex and difficult to continue long term. Many trials have been conducted to improve adherence to medication. Core domains, which are the outcomes of most relevance to patients and clinicians, are a pivotal component of any trial. These core domains should be measured consistently, so that all relevant trials can be combined in systematic reviews and meta-analyses to reach conclusions that are more valid. Failure to do this severely limits the potential for trial-based evidence to inform decisions on how to support medication adherence. The Outcome Measures in Rheumatology (OMERACT) - Interventions for Medication Adherence study by the OMERACT-Adherence Group aims to develop a core domain set for interventions that aim to support medication adherence in rheumatology. METHODS/DESIGN: This OMERACT-Adherence study has five phases: (1) a systematic review to identify outcome domains that have been reported in interventions focused on supporting medication adherence in rheumatology; (2) semi-structured stakeholder interviews with patients and caregivers to determine their views on the core domains; (3) focus groups using the nominal group technique with patients and caregivers to identify and rank domains that are relevant to them, including the reasons for their choices; (4) an international three-round modified Delphi survey involving patients with diverse rheumatic conditions, caregivers, health professionals, researchers and other stakeholders to develop a preliminary core domain set; and (5) a stakeholder workshop with OMERACT members to review, vote on and reach a consensus on the core domain set for interventions to support medication adherence in rheumatology. DISCUSSION: Establishing a core domain set to be reported in all intervention studies undertaken to support patients with medication adherence will enhance the relevance and the impact of these results and improve the lives of people with rheumatic conditions.
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Antirreumáticos/uso terapéutico , Ensayos Clínicos como Asunto/métodos , Cumplimiento de la Medicación , Evaluación de Resultado en la Atención de Salud , Proyectos de Investigación , Enfermedades Reumáticas/tratamiento farmacológico , Cuidadores/psicología , Consenso , Técnica Delphi , Conocimientos, Actitudes y Práctica en Salud , Humanos , Entrevistas como Asunto , Pacientes/psicología , Enfermedades Reumáticas/diagnóstico , Enfermedades Reumáticas/psicología , Participación de los Interesados , Resultado del TratamientoRESUMEN
OBJECTIVE: Patients with systemic sclerosis (SSc) experience severe physical limitations and psychological morbidity, but their lived experience remains underrepresented and is reflected in the scarcity of evidence-based patient-centered interventions. We aimed to describe patients' perspectives of SSc to inform strategies to improve their care. METHODS: Face-to-face semistructured interviews were conducted with 30 adult patients with limited cutaneous or diffuse cutaneous SSc in Australia. Transcripts were thematically analyzed using HyperRESEARCH software. RESULTS: Six themes were identified: bodily malfunction (restrictive pain, debilitating physical changes, pervasive exhaustion), deprivation of social function (loss of work and career, social isolation, threat to traditional roles, loss of intimacy), disintegration of identity (stigmatizing physical changes, disassociated self-image, extinguished hopes, alone and powerless, invisibility of illness), insecurity of care (unrecognized disease, ambiguity around diagnosis and cause, information insufficiency, resigning to treatment limitations, seeking reassurance, fear of progression), avoiding the sick role (evading thoughts of sickness, protecting family, favorable comparison), and perseverance and hope (positive stoicism, optimism about treatment and monitoring, taking control of own health, pursuing alternative treatments, transcending illness through support). CONCLUSION: SSc inflicts major bodily and social restrictions that crush patients' identity and self-image. Uncertainties about the cause, diagnosis, and prognosis can undermine confidence in care, leading to anxiety and therapeutic nihilism. Access to psychosocial care to support the patients' role and functioning capacity, as well as communication and education that explicitly address their concerns regarding management may potentially improve treatment satisfaction, self-efficacy, adherence, and outcomes in patients with SSc.
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Participación del Paciente/psicología , Esclerodermia Sistémica/psicología , Esclerodermia Sistémica/terapia , Autoimagen , Autoeficacia , Autoinforme , Adulto , Anciano , Anciano de 80 o más Años , Femenino , Humanos , Masculino , Persona de Mediana Edad , Participación del Paciente/métodos , Esclerodermia Sistémica/diagnóstico , Adulto JovenRESUMEN
BACKGROUND: Medical officers (trainees) in their first to third postgraduate years (PGY-1-3s) work in complex, busy environments, performing tasks that require concentration and application of learned skills. There are frequently competing demands, and being paged is among the most common. OBJECTIVE: We quantified and described the effect of interruptions that paging created on the clinical workflow of PGY-1-3s during ward duties. METHODS: This prospective study was conducted at 2 teaching hospitals in Sydney, Australia. Medical students were recruited as observers to log interruptions of PGY-1-3s' workflow arising from pages from other members of the hospital team. RESULTS: Forty-two pairs consisting of a PGY-1-3 trainee and an observer were recruited, with 24 proceeding to data collection. Nursing was the most frequent source of pages (47%); other medical staff accounted for 16% of pages, allied health for 12%, and others for 24% (with pharmacy the most common). Pages commonly involved direct patient care (46%), followed by medication issues (21%). Tasks interrupted by pages encompassed direct patient care (37%), indirect patient care (15%), and documentation (12%). Only 27% of pages were assessed as appropriate and urgent, while 58% were considered appropriate but not urgent, and 16% were not appropriate. Only 38% of pages were judged to be clinically more important than the task they interrupted. CONCLUSIONS: Pages frequently interrupted direct patient care activities for PGY-1-3 trainees, and a significant proportion of pages were identified as either not requiring immediate attention or not appropriate, resulting in potentially avoidable interruptions to clinical workflow. Alternate means of alerting trainees to nonurgent tasks may reduce interruptions and facilitate patient care.