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BACKGROUND: A cost of illness (COI) study aims to evaluate the socioeconomic burden that an illness imposes on society as a whole. This study aimed to describe the resources used, patterns of care, direct cost, and loss of productivity due to systemic lupus erythematosus (SLE) in Brazil. METHODS: This 12-month, cross-sectional, COI study of patients with SLE (ACR 1997 Classification Criteria) collected data using patient interviews (questionnaires) and medical records, covering: SLE profile, resources used, morbidities, quality of life (12-Item Short Form Survey, SF-12), and loss of productivity. Patients were excluded if they were retired or on sick leave for another illness. Direct resources included health-related (consultations, tests, medications, hospitalization) or non-health-related (transportation, home adaptation, expenditure on caregivers) hospital resources.Costs were calculated using the unit value of each resource and the quantity consumed. A gamma regression model explored cost predictors for patients with SLE. RESULTS: Overall, 300 patients with SLE were included (92.3% female,mean [standard deviation (SD)] disease duration 11.8 [7.9] years), of which 100 patients (33.3%) were on SLE-related sick leave and 46 patients (15.3%) had stopped schooling. Mean (SD) travel time from home to a care facility was 4.4 (12.6) hours. Antimalarials were the most commonly used drugs (222 [74.0%]). A negative correlation was observed between SF-12 physical component and SLE Disease Activity Index (- 0.117, p = 0.042), Systemic Lupus International CollaboratingClinics/AmericanCollegeofRheumatology Damage Index (- 0.115, p = 0.046), medications/day for multiple co-morbidities (- 0.272, p < 0.001), SLE-specific drugs/day (- 0.113, p = 0.051), and lost productivity (- 0.570, p < 0.001). For the mental component, a negative correlation was observed with medications/day for multiple co-morbidities (- 0.272, p < 0.001), SLE-specific medications/day (- 0.113, p = 0.051), and missed appointments (- 0.232, p < 0.001). Mean total SLE cost was US$3,123.53/patient/year (median [interquartile range (IQR)] US$1,618.51 [$678.66, $4,601.29]). Main expenditure was medication, with a median (IQR) cost of US$910.62 ($460, $4,033.51). Mycophenolate increased costs by 3.664 times (p < 0.001), and inflammatory monitoring (erythrocyte sedimentation rate or C-reactive protein) reduced expenditure by 0.381 times (p < 0.001). CONCLUSION: These results allowed access to care patterns, the median cost for patients with SLE in Brazil, and the differences across regions driven by biological, social, and behavioral factors. The cost of SLE provides an updated setting to support the decision-making process across the country.
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Lupus Eritematoso Sistémico , Calidad de Vida , Humanos , Femenino , Masculino , Estudios Transversales , Brasil , Lupus Eritematoso Sistémico/tratamiento farmacológico , Costo de EnfermedadRESUMEN
Abstract Background A cost of illness (COI) study aims to evaluate the socioeconomic burden that an illness imposes on society as a whole. This study aimed to describe the resources used, patterns of care, direct cost, and loss of productivity due to systemic lupus erythematosus (SLE) in Brazil. Methods This 12-month, cross-sectional, COI study of patients with SLE (ACR 1997 Classification Criteria) collected data using patient interviews (questionnaires) and medical records, covering: SLE profile, resources used, morbidities, quality of life (12-Item Short Form Survey, SF-12), and loss of productivity. Patients were excluded if they were retired or on sick leave for another illness. Direct resources included health-related (consultations, tests, medications, hospitalization) or non-health-related (transportation, home adaptation, expenditure on caregivers) hospital resources. Costs were calculated using the unit value of each resource and the quantity consumed. A gamma regression model explored cost predictors for patients with SLE. Results Overall, 300 patients with SLE were included (92.3% female, mean [standard deviation (SD)] disease duration 11.8 [7.9] years), of which 100 patients (33.3%) were on SLE-related sick leave and 46 patients (15.3%) had stopped schooling. Mean (SD) travel time from home to a care facility was 4.4 (12.6) hours. Antimalarials were the most commonly used drugs (222 [74.0%]). A negative correlation was observed between SF-12 physical component and SLE Disease Activity Index (- 0.117, p = 0.042), Systemic Lupus International CollaboratingClinics/AmericanCollegeofRheumatology Damage Index (- 0.115, p = 0.046), medications/day for multiple co-morbidities (- 0.272, p < 0.001), SLE-specific drugs/day (- 0.113, p = 0.051), and lost productivity (- 0.570, p < 0.001). For the mental component, a negative correlation was observed with medications/day for multiple co-morbidities (- 0.272, p < 0.001), SLE-specific medications/day (- 0.113, p = 0.051), and missed appointments (- 0.232, p < 0.001). Mean total SLE cost was US$3,123.53/patient/year (median [interquartile range (IQR)] US$1,618.51 [$678.66, $4,601.29]). Main expenditure was medication, with a median (IQR) cost of US$910.62 ($460, $4,033.51). Mycophenolate increased costs by 3.664 times (p < 0.001), and inflammatory monitoring (erythrocyte sedimentation rate or C-reactive protein) reduced expenditure by 0.381 times (p < 0.001). Conclusion These results allowed access to care patterns, the median cost for patients with SLE in Brazil, and the differences across regions driven by biological, social, and behavioral factors. The cost of SLE provides an updated setting to support the decision-making process across the country.
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In this international study, we examined the incidence of hip fractures, postfracture treatment, and all-cause mortality following hip fractures, based on demographics, geography, and calendar year. We used patient-level healthcare data from 19 countries and regions to identify patients aged 50 years and older hospitalized with a hip fracture from 2005 to 2018. The age- and sex-standardized incidence rates of hip fractures, post-hip fracture treatment (defined as the proportion of patients receiving anti-osteoporosis medication with various mechanisms of action [bisphosphonates, denosumab, raloxifene, strontium ranelate, or teriparatide] following a hip fracture), and the all-cause mortality rates after hip fractures were estimated using a standardized protocol and common data model. The number of hip fractures in 2050 was projected based on trends in the incidence and estimated future population demographics. In total, 4,115,046 hip fractures were identified from 20 databases. The reported age- and sex-standardized incidence rates of hip fractures ranged from 95.1 (95% confidence interval [CI] 94.8-95.4) in Brazil to 315.9 (95% CI 314.0-317.7) in Denmark per 100,000 population. Incidence rates decreased over the study period in most countries; however, the estimated total annual number of hip fractures nearly doubled from 2018 to 2050. Within 1 year following a hip fracture, post-hip fracture treatment ranged from 11.5% (95% CI 11.1% to 11.9%) in Germany to 50.3% (95% CI 50.0% to 50.7%) in the United Kingdom, and all-cause mortality rates ranged from 14.4% (95% CI 14.0% to 14.8%) in Singapore to 28.3% (95% CI 28.0% to 28.6%) in the United Kingdom. Males had lower use of anti-osteoporosis medication than females, higher rates of all-cause mortality, and a larger increase in the projected number of hip fractures by 2050. Substantial variations exist in the global epidemiology of hip fractures and postfracture outcomes. Our findings inform possible actions to reduce the projected public health burden of osteoporotic fractures among the aging population. © 2023 The Authors. Journal of Bone and Mineral Research published by Wiley Periodicals LLC on behalf of American Society for Bone and Mineral Research (ASBMR).
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Fracturas de Cadera , Osteoporosis , Fracturas Osteoporóticas , Masculino , Femenino , Humanos , Persona de Mediana Edad , Anciano , Incidencia , Fracturas de Cadera/tratamiento farmacológico , Fracturas de Cadera/epidemiología , Osteoporosis/tratamiento farmacológico , Fracturas Osteoporóticas/epidemiología , Difosfonatos/uso terapéuticoRESUMEN
Clinical practice guidelines (CPG) are developed to align standards of health care around the world, aiming to reduce the incidence of misconducts and enabling more effective use of health resources. Considering the complexity, cost, and time involved in formulating CPG, strategies should be used to facilitate and guide authors through each step of this process. The main objective of this document is to present a methodological guide prepared by the Epidemiology Committee of the Brazilian Society of Rheumatology for the elaboration of CPG in rheumatology. Through an extensive review of the literature, this study compiles the main practical recommendations regarding the following steps of CPG drafting: distribution of working groups, development of the research question, search, identification and selection of relevant studies, evidence synthesis and quality assessment of the body of evidence, the Delphi methodology for consensus achievement, presentation and dissemination of the recommendations, CPG quality assessment and updating. This methodological guide serves as an important tool for rheumatologists to develop reliable and high-quality CPG, standardizing clinical practices worldwide.
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Reumatología , Humanos , Brasil , ConsensoRESUMEN
The purpose of this series was to describe the ultrasonographic and radiographic manifestations of changes to the hands and wrists in 50 patients with chronic musculoskeletal symptoms secondary to Chikungunya fever during the 2016 outbreak that occurred in Rio de Janeiro, Brazil. Most of the plain radiographs were normal (62%). The most common ultrasonographic findings were small joint synovitis (84%), wrist synovitis (74%), finger tenosynovitis (70%), and cellulitis (50%). In most cases, power Doppler did not show an increase in synovial vascular flow. The plain radiographs showed no specific findings, whereas the ultrasound images revealed synovial compromise and neural thickening.
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Celulitis (Flemón)/diagnóstico por imagen , Fiebre Chikungunya/complicaciones , Fiebre Chikungunya/diagnóstico por imagen , Mano/diagnóstico por imagen , Tenosinovitis/diagnóstico por imagen , Brasil , Celulitis (Flemón)/etiología , Estudios Transversales , Femenino , Humanos , Masculino , Persona de Mediana Edad , Tenosinovitis/etiología , Muñeca/diagnóstico por imagenRESUMEN
OBJECTIVE: To assess hepatitis B virus (HBV) reactivation rates in patients with resolved or chronic HBV infection, receiving disease-modifying antirheumatic drugs (DMARDs) and with or without antiviral prophylaxis. METHODS: We conducted a systematic review and meta-analysis. Electronic searches were conducted in PubMed, Medline, and Embase using Ovid through December 31, 2015. A search strategy was developed for each database using the following inclusion criteria: for participants, rheumatoid arthritis, psoriatic arthritis, ankylosing spondylitis, and resolved or chronic HBV infection; for intervention, tumor necrosis factor (TNF) inhibitors or non-TNF biologic or nonbiologic DMARDs; and for outcome, HBV reactivation. Four reviewers independently extracted study data and assessed study quality using the Newcastle-Ottawa Scale. To determine the pooled HBV reactivation rate, the variances of the raw proportions were stabilized using a Freeman-Tukey-type arcsine square root transformation, using a random-effects model. RESULTS: Twenty-five studies met the inclusion criteria. The overall pooled rate of HBV reactivation was 1.6% (95% confidence interval [95% CI] 0.8-2.6) in patients with resolved HBV. Similar rates were observed in resolved patients taking TNF inhibitors (1.4% [95% CI 0.5-2.6]), non-TNF biologics (6.1% [95% CI 0.0-16.6]), and nonbiologic DMARDs (1.7% [95% CI 0.2-4.2]). We also found that the reactivation rate was lower in patients with chronic HBV infection who received antiviral prophylaxis (9.0% [95% CI 4.1-15.5]) than in those who did not (14.6% [95% CI 4.3-29.0]). CONCLUSION: We found that the HBV reactivation rate in inflammatory arthritis patients receiving DMARDs was low in resolved patients and moderate in patients with chronic HBV infection. Further, lower rates were observed in patients with chronic HBV infection who were using antiviral prophylaxis.
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Artritis/complicaciones , Hepatitis B Crónica/virología , Antirreumáticos/uso terapéutico , Antivirales/uso terapéutico , Artritis/tratamiento farmacológico , Hepatitis B Crónica/prevención & control , HumanosRESUMEN
OBJECTIVE: We described the clinical profile and outcomes of patients with SLE and RA diseases reported to the Brazilian Health Information System with primary dengue infection. METHODS: Databases from the Brazilian Public Health Informatics System (SUS) were linked as the source of information. Three databases comprising different longitudinal information of lupus or rheumatoid arthritis (RA) patients under treatment and care through the Brazilian Health System were linked. Patients who had lupus ICD-9 code or RA ICD-9 code and their treatment approved by SUS were included in the study. In Study 1, we described the clinical characteristics of RA/lupus patients who had dengue infection. In Study 2, we compared RA/lupus patients with or without dengue for hospitalization rates after index dengue diagnosis for dengue-exposed or matching date for dengue-unexposed. RESULTS: We included 69 SLE and 301 RA patients with dengue. In the RA/lupus with dengue case series, hospitalization was found in 24.6% of lupus subjects and of 11.2% of RA subjects. It differed by geographic region (p = 0.03), gender (p = 0.05) and the use of azathioprine (p = 0.02). Dengue was the most frequent reason for hospitalization reported (43.0%). Hospitalization due to dengue was noted in 12 (42.9%) dengue-exposed patients (p = 0.02), while rheumatoid arthritis was reported as the cause of hospitalization in 22.2% of dengue-unexposed (p = 0.005). Five deaths were reported among the dengue-exposed and none among dengue-unexposed. Bacterial infection was the most frequent cause of death. We found that the dengue exposure was associated with an increased risk of hospitalization outcome in RA and lupus patients (RR = 6.2; 95% CI: 2.99-12.94). SUMMARY: We found that when comparing RA/lupus patients with or without dengue, dengue-exposed patients had an increased rates of hospitalization and death.
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Artritis Reumatoide/complicaciones , Dengue/complicaciones , Lupus Eritematoso Sistémico/complicaciones , Adulto , Anciano , Artritis Reumatoide/mortalidad , Brasil , Bases de Datos Factuales , Dengue/mortalidad , Femenino , Hospitalización , Humanos , Lupus Eritematoso Sistémico/mortalidad , Masculino , Persona de Mediana Edad , Índice de Severidad de la Enfermedad , Tasa de SupervivenciaRESUMEN
OBJECTIVE: To describe the main ultrasound findings of chikungunya fever in the ankle. MATERIALS AND METHODS: This was a cross-sectional observational study involving 52 patients referred to the Hospital Universitário Pedro Ernesto and presenting with clinical and biochemical evidence of chikungunya fever. The examinations were performed by a radiologist with more than 20 years of experience in ultrasound. RESULTS: The predominant gender was female (in 88.5%), and the mean age was 58.4 years. The majority (61.5%) of the patients came from the northern part of the city of Rio de Janeiro, and 46.2% were using corticosteroids to treat inflammatory symptoms. The most common alterations observed by ultrasound were joint effusion (in 69.2%), tenosynovitis (in 59.6%), cellulitis (in 46.2%), Kager's fat pad thickening (in 29.9%), myositis (of the soleus or flexor hallucis longus muscle) (in 17.3%), retrocalcaneal bursitis (in 5.8%), tendon ruptures (in 3.8%), and increased vascular flow on power Doppler (in 3.8%). CONCLUSION: Signs of synovitis and tenosynovitis were the main ultrasound findings in a predominantly female population with a mean age of 58.4 years. Further studies are needed in order to define the role of ultrasound in the follow-up of such patients.
OBJETIVO: Descrever os principais achados ultrassonográficos da febre chikungunya no tornozelo. MATERIAIS E MÉTODOS: Estudo transversal e observacional com 52 pacientes encaminhados ao Hospital Universitário Pedro Ernesto com quadros clínico e laboratorial compatíveis com febre chikungunya. Os exames foram realizados por um radiologista com mais de 20 anos de experiência no método. RESULTADOS: Houve predomínio do sexo feminino (88,5%) e média de idade dos pacientes de 58,4 anos. A maioria dos doentes (61,5%) era proveniente da zona norte da cidade do Rio de Janeiro e fazia uso de esteroides (46,2%) para o tratamento dos sintomas inflamatórios. As alterações ultrassonográficas mais comuns foram: derrame articular (69,2%), tenossinovites (59,6%), celulite (46,2%), espessamento da gordura de Kager (29,9%), miosite (sóleo e/ou flexor longo do hálux) (17,3%), bursite retrocalcânea (5,8%), roturas tendíneas (3,8%) e hiperfluxo vascular pelo Doppler de amplitude (3,8%). CONCLUSÃO: Predominaram os sinais ultrassonográficos de sinovite e tenossinovite numa população majoritariamente do sexo feminino e com idade média de 58,4 anos. Sugere-se a realização de outros estudos para definição do papel da ultrassonografia no acompanhamento desses doentes.
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Treatment survival with biological therapy may be influenced by many factors, and it seems to be different among various rheumatic diseases and biological agents. The goal of the study was to compare the drug survival and the causes of discontinuation of anti-tumoral necrosis factor (anti-TNF) therapy in ankylosing spondylitis (AS) with rheumatoid arthritis (RA). Study participants were a cohort from the Brazilian Registry of Biological Therapies in Rheumatic Diseases (BIOBADABRASIL) between 2008 and 2012. The observation time was up to 4 years following the introduction of the first treatment. Gender, age, disease duration, disease activity, comorbidities, and concomitant therapies were assessed. A total of 1303 patients were included: 372 had AS and 931 had RA in which 38.7 % (n = 504) used infliximab (IFX), 34.9 % (n = 455) used adalimumab (ADA), and 26.4 % (n = 344) used etanercept (ETA). The anti-TNF drug survival of patients with AS was 63.08 months (confidence interval (CI) 60.24, 65.92) and patients with RA was 47.5 months (CI 45.65, 49.36). It was significant higher in AS (log-rank; p ≤ 0.001). Patients with RA discontinued anti-TNF more than patients with AS when adjusted to gender and corticosteroid. The adjHR (95 % CI) was 1.6 (1.14, 2.31). Female patients who were also corticosteroid users, but not of advanced age, have shown lower survival for both diseases (log-rank, p ≤ 0.001). The discontinuation rate of IFX, but not of ADA or ETA, was significantly higher in RA than in SA; HR (95 % CI) was 2.49 (1.46, 4.24). The main causes of discontinuation were ineffectiveness and adverse event in both diseases. AS patients have better drug survival adjusted to gender, age, and corticosteroid. This results appear to be related to the disease mechanism.
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Adalimumab/uso terapéutico , Antirreumáticos/uso terapéutico , Artritis Reumatoide/tratamiento farmacológico , Etanercept/uso terapéutico , Infliximab/uso terapéutico , Sistema de Registros , Espondilitis Anquilosante/tratamiento farmacológico , Factor de Necrosis Tumoral alfa/antagonistas & inhibidores , Corticoesteroides/uso terapéutico , Adulto , Factores de Edad , Anciano , Brasil , Estudios de Cohortes , Quimioterapia Combinada , Femenino , Humanos , Masculino , Persona de Mediana Edad , Factores Sexuales , Factores de Tiempo , Insuficiencia del Tratamiento , Resultado del TratamientoRESUMEN
BACKGROUND: The burden of knee osteoarthritis (OA) in Latin America is unknown. OBJECTIVE: To determine the demographic, clinical, and therapeutic characteristics of patients with OA in Argentina, Brazil, and Mexico. MATERIAL AND METHODS: This is an observational, cross-sectional study of patients with symptomatic knee OA referred from first care medical centers to Rheumatology departments. RESULTS: We included 1210 patients (Argentina 398, Brazil 402, Mexico 410; mean age 61.8 [12] years; 80.8% females). Knee OA pain lasted for 69 months; the duration and severity of the last episode were 190 days and (SD 5.2 [3.3]; 74% had functional limitations, but very few patients lost their job because of knee OA. Around 71% had taken medications, but 63% relied on their own pocket to afford knee OA cost. Most demographic and clinical variables differed across countries, particularly the level of pain, disability, treatment, and access to care. The variable country of origin influenced the level of pain, disability, and NSAIDs use in logistic regression models; age, pain, treatment, and health care access influenced at least 2 of the models. CONCLUSIONS: The burden of knee OA in Latin American depends on demographic, clinical, and therapeutic variables. The role of such variables differs across countries. The level of certain variables is significantly influenced by country of origin and health care system.
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Atención a la Salud/estadística & datos numéricos , Osteoartritis de la Rodilla , Anciano , Argentina , Brasil , Costo de Enfermedad , Estudios Transversales , Femenino , Humanos , Masculino , México , Persona de Mediana Edad , Osteoartritis de la Rodilla/diagnóstico , Osteoartritis de la Rodilla/terapiaRESUMEN
OBJECTIVE: Conventional hemodialysis (HD) predominates over peritoneal dialysis (PD) around the world. Prospective and comparative studies comparing the costs of these modalities are scarce. In the present prospective assessment, we describe the resources used and total patient costs for both HD and PD. ⢠METHODOLOGY: We assessed 249 patients on HD and 228 on PD. All patients were 18 years of age or older and on stable dialysis. The information was collected at three points over 1 year, using standard questionnaires. The sources for costs were the Brazilian public and private health care systems. Societal perspective was considered. ⢠STATISTICAL ANALYSIS: Core trends and dispersions were measured. Regression models assessed the impact of modality on the average total cost per patient per year. ⢠RESULTS: Of the 249 HD patients and 228 PD dialysis patients, 189 (74%) and 160 (70%) respectively completed follow-up. The mean age for women was 55.8 years; for men, it was 59.8 years (p = 0.001). The average total cost per patient-year was US$28 570 for HD and US$27 158 for PD. By category, the costs consisted of direct medical-hospital costs (82.3% for HD, 86.5% for PD), direct nonmedical costs (5.3% for HD, 3.7% for PD), and indirect costs (12.4% for HD, 9.8% for PD). Overall costs were less for PD patients than for their HD counterparts (p = 0.025). ⢠CONCLUSIONS: Maintenance dialysis represented the most important source of costs for both modalities; loss of productivity incurred significant costs. Future studies should contemplate the social consequences arising from each modality.
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Costo de Enfermedad , Fallo Renal Crónico/economía , Diálisis Peritoneal/economía , Diálisis Renal/economía , Adulto , Brasil , Femenino , Humanos , Fallo Renal Crónico/terapia , Masculino , Persona de Mediana Edad , Análisis Multivariante , Estudios Prospectivos , Transportes/economíaAsunto(s)
Técnicas de Apoyo para la Decisión , Práctica Clínica Basada en la Evidencia/métodos , Investigación sobre Servicios de Salud/métodos , Relaciones Interprofesionales , Modelos Educacionales , Atención al Paciente/métodos , Competencia Clínica , Toma de Decisiones , Práctica Clínica Basada en la Evidencia/tendencias , Encuestas de Atención de la Salud , Investigación sobre Servicios de Salud/tendencias , Humanos , Grupo de Atención al Paciente/organización & administración , Enseñanza/métodos , Estados UnidosRESUMEN
OBJECTIVES: The aim of this study was to evaluate quality of life in patients undergoing hemodialysis (HD) or peritoneal dialysis (PD) in São Paulo, Brazil. METHODS: Inclusion criteria for this is a 1-year prospective study included being 18 years of age or older and clinically stable receiving chronic dialysis. Quality of life was measured using the SF-12 and the Kidney Disease Quality of Life questionnaires at baseline, 6 months, and 12 months. Patients who completed the surveys for all three periods were evaluated. Differences in quality of life scores were measured using univariate and multivariate regression analyses. RESULTS: One hundred eighty-nine of 249 (76%) HD patients and 161 of 228 (71%) PD patients completed all three surveys. The PD group was older and a larger number had diabetes. PD patients consistently had higher scores than HD patients at all three measurement periods for patient satisfaction (P = 0.002, P = 0.005, and P = 0.005, respectively), encouragement/support from staff (P = 0.003, P = 0.017, and P = 0.029, respectively), and burden of kidney disease (P = 0.003, P = 0.017, and P = 0.057, respectively). The HD group had a greater percent of patients who clinically improved from baseline to 12 months compared to PD patients for sleep quality, social support, encouragement/support from staff, and overall health. Scores for other dimensions of the Kidney Disease Quality of Life and SF-12 questionnaires were not significantly different between the PD and HD groups. CONCLUSIONS: The results provide evidence that PD and HD patients have equivalent health-related quality of life in several domains, although the former performed better in some quality of life domains despite being older and having more comorbidities.
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Enfermedades Renales/terapia , Diálisis Peritoneal , Calidad de Vida , Diálisis Renal , Adulto , Factores de Edad , Actitud del Personal de Salud , Brasil/epidemiología , Enfermedad Crónica , Comorbilidad , Costo de Enfermedad , Femenino , Encuestas de Atención de la Salud , Humanos , Enfermedades Renales/epidemiología , Enfermedades Renales/psicología , Estudios Longitudinales , Masculino , Persona de Mediana Edad , Relaciones Profesional-Paciente , Estudios Prospectivos , Análisis de Regresión , Apoyo Social , Encuestas y Cuestionarios , Factores de Tiempo , Resultado del TratamientoRESUMEN
OBJECTIVES: To find preferences for treatment expressed by lupus patients and physicians (who were asked to assume they have lupus) and to explore if certain variables explain these preferences. METHODS: One hundred seventy-two patients and 202 physicians were interviewed using a lupus nephritis decision board that describes the treatment options and their potential benefits and risks. Clinical and sociodemographic variables were collected. Participants were asked to indicate their preferred treatment and provide justification for their choice. Descriptive statistics, t tests, and Pearson's chi-square tests were used to determine the significance of differences in the decisions made by the two groups. A logistic regression model determined which factors contributed to treatment decisions. RESULTS: The average age of study participants was 34 ± 8 years for patients and 31 ± 7 years for physicians. Sixty-eight percent of patients and 96% of physicians (P < 0.001) selected the oral option. Patients and physicians justified their choice of treatment using different arguments (P < 0.001 in each case). Logistic regression showed that risk potential (P < 0.001) and a history of joint involvement (P = 0.011) were the arguments used most often to explain a patient's decision and the risk of side effects was most relevant among physicians (P < 0.001). CONCLUSIONS: Using a decision board, patients and physicians were found to have different preferences for treatment when faced with the same treatment options. Further, the variables that influence their preferences are different.
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Técnicas de Apoyo para la Decisión , Inmunosupresores/uso terapéutico , Nefritis Lúpica/tratamiento farmacológico , Participación del Paciente , Prioridad del Paciente , Pautas de la Práctica en Medicina , Adulto , Brasil , Distribución de Chi-Cuadrado , Conducta de Elección , Estudios Transversales , Femenino , Humanos , Inmunosupresores/efectos adversos , Modelos Logísticos , Nefritis Lúpica/diagnóstico , Participación del Paciente/estadística & datos numéricos , Prioridad del Paciente/estadística & datos numéricos , Pautas de la Práctica en Medicina/estadística & datos numéricos , Medición de Riesgo , Factores de RiesgoRESUMEN
OBJECTIVE: Decision boards (DBs) help clinicians present options and include patients in the decision-making process. Our objective was to describe the steps to develop a DB to support shared decision making and assess reliability and construct validity. METHODS: Systemic lupus erythematosus (SLE) scenarios were designed with the support of experts for disease severity, potential side effects, and outcomes. The DB comprised clinical information, 2 different treatment options (oral and intravenous), a description of the potential to control SLE within 5 years, and a list of potential side effects. Patients selected what they thought would be the 3 worst side effects and were informed of the probability that these would occur. We presented the DB to 172 patients who were asked to select and justify 1 treatment option. Reliability was assessed by kappa statistics. Construct validity was tested by an a priori hypothesis, analyzing the correlation between treatment decision and side effects selected, self-assessment score, educational level, and clinical aspects. RESULTS: Patients favored oral medication, and side effects most often listed were iatrogenic cancer (44.2%), hair loss (21.6%), and severe infection (19.1%). Justifications were risk (48.9%), practicality (36.6%), effectiveness (12.2%), and risk-benefit tradeoff (2.3%). Reliability was similar to that found in the test phase (kappa = 0.689, P < 0.001). Validity was tested by prediction of treatment decision based on the undesirable side effects selected (P = 0.047). DB content was clear and easy for all patients to understand (P = 0.05). Immunosuppressive drugs influenced patient decisions (P = 0.006). CONCLUSION: DB is a reliable and valid instrument to assess SLE patient preference.