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1.
J Rheumatol ; 51(4): 390-395, 2024 Apr 01.
Artigo em Inglês | MEDLINE | ID: mdl-38224979

RESUMO

OBJECTIVE: The World Trade Center (WTC) attack in New York resulted in a dust plume containing silica, hydrocarbons, and asbestos. Autoimmune disorders have been reported among those with WTC site exposure. The characteristics of individuals developing systemic sclerosis (SSc) have not been previously described. The purpose of this study was to describe the features of patients with SSc with WTC exposure. METHODS: Data were collected from 11 patients with SSc or SSc spectrum conditions who reported exposure to the WTC site. Seven patients completed an exposure assessment. RESULTS: Of the 11 patients, the majority (n = 8) were female. The median (range) for age at diagnosis was 46 (36-75) years, time between exposure and first non-Raynaud phenomenon SSc symptom was 8 (1-19) years, and time between exposure and diagnosis was 11 (2-18) years. Fifty-five percent had SSc onset > 5 years from WTC exposure. Five patients had limited cutaneous SSc, 3 patients had diffuse cutaneous SSc, 1 patient with SSc features met criteria for mixed connective tissue disease (CTD), and 2 patients had undifferentiated CTD with features of SSc. Four patients had overlapping features with other CTDs. Interstitial lung disease (ILD) was present in 10 patients. Five of 11 patients had a history of tobacco use. Seven of 7 patients who completed the questionnaire reported other hazardous exposures outside of WTC. Of these, only 2 patients reported personal protective equipment use. CONCLUSION: A high frequency of ILD and overlap features were observed among patients with SSc with WTC exposure. Future studies are needed to characterize this association.


Assuntos
Doenças Autoimunes , Doenças Pulmonares Intersticiais , Esclerodermia Difusa , Escleroderma Sistêmico , Humanos , Masculino , Feminino , Pessoa de Meia-Idade , Escleroderma Sistêmico/epidemiologia , Doenças Pulmonares Intersticiais/epidemiologia , Doenças Pulmonares Intersticiais/etiologia , Doenças Pulmonares Intersticiais/diagnóstico
2.
ACR Open Rheumatol ; 5(1): 4-9, 2023 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-36317552

RESUMO

OBJECTIVE: Self-efficacy, the internal belief that one can perform a specific task successfully, influences behavior. To promote critical appraisal of medical literature, rheumatology training programs should foster both competence and self-efficacy for critical appraisal. This study aimed to investigate whether select items from the Clinical Research Appraisal Inventory (CRAI), an instrument measuring clinical research self-efficacy, could be used to measure critical appraisal self-efficacy (CASE). METHODS: One hundred twenty-five trainees from 33 rheumatology programs were sent a questionnaire that included two sections of the CRAI. Six CRAI items relevant to CASE were identified a priori; responses generated a CASE score (total score range 0-10; higher = greater confidence in one's ability to perform a specific task successfully). CASE scores' internal structure and relation to domain-concordant variables were analyzed. RESULTS: Questionnaires were completed by 112 of 125 (89.6%) trainees. CASE scores ranged from 0.5 to 8.2. The six CRAI items contributing to the CASE score demonstrated high internal consistency (Cronbach's α = 0.95) and unidimensionality. Criterion validity was supported by the findings that participants with higher CASE scores rated their epidemiology and biostatistics understanding higher than that of peers (P < 0.0001) and were more likely to report referring to studies to answer clinical questions (odds ratio 2.47, 95% confidence interval 1.41-4.33; P = 0.002). The correlation of CASE scores with percentage of questions answered correctly was only moderate, supporting discriminant validity. CONCLUSION: The six-item CASE instrument demonstrated content validity, internal consistency, discriminative capability, and criterion validity, including correlation with self-reported behavior, supporting its potential as a useful measure of critical appraisal self-efficacy.

3.
JAMA ; 327(13): 1300, 2022 04 05.
Artigo em Inglês | MEDLINE | ID: mdl-35380583
4.
JAMA ; 327(12): 1194, 2022 03 22.
Artigo em Inglês | MEDLINE | ID: mdl-35315883
5.
J Rheumatol ; 49(1): 60-67, 2022 01.
Artigo em Inglês | MEDLINE | ID: mdl-34470795

RESUMO

OBJECTIVE: Frailty is associated with mortality in systemic lupus erythematosus (SLE), but how best to measure frailty is unclear. We aimed to compare 2 frailty metrics, the self-reported Fatigue, Resistance, Ambulation, Illnesses, and Loss of weight (FRAIL) scale (FS) and the Fried phenotype (FP), in SLE to evaluate differences between frail and nonfrail women and whether frailty is associated with self-reported disability. METHODS: Adult women aged < 70 years with validated SLE and mild/moderate disease enrolled in this cross-sectional study between August 2018 and October 2019. Correlation and agreement between the FS and the FP were determined. Differences in sociodemographic and disease characteristics, patient-reported outcome measures (PROMs), and biomarkers between frail and nonfrail participants were evaluated, as well as the association of frailty with Valued Life Activities disability. RESULTS: Of 67 participants, 27% and 18% were frail according to the FS and the FP, respectively. Correlation (r = 0.51; P < 0.0001) and agreement (κ = 0.46; P = 0.0004) between the FS and the FP were significant. Frail women had greater disease damage, high-sensitivity C-reactive protein, and interleukin 6, and worse PROMs according to both frailty definitions. Both frailty measures were associated with self-reported disability after adjustment for age, comorbidity, and disease activity and damage; this relationship was attenuated for the FP. CONCLUSION: Frailty prevalence was high in this cohort of women with SLE using both frailty definitions, suggesting that frailty may be accelerated in women with SLE, particularly when based exclusively on self-report. Frailty remained associated with self-reported disability in adjusted analyses. The FS may be an informative point-of-care tool to identify frail women with SLE.


Assuntos
Fragilidade , Lúpus Eritematoso Sistêmico , Idoso , Estudos Transversais , Feminino , Idoso Fragilizado , Fragilidade/diagnóstico , Fragilidade/epidemiologia , Avaliação Geriátrica , Humanos , Medidas de Resultados Relatados pelo Paciente
7.
HSS J ; 17(2): 158-164, 2021 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-34421425

RESUMO

Background: Multidisciplinary team mentoring increasingly is being advocated for biomedical research training. Before implementing a curriculum that could include team mentoring, we asked faculty about their opinions of this mentoring approach. Questions/Purposes: The goals of this study were to ask faculty about the benefits, challenges, and drawbacks of team mentoring in research training. Methods: Twenty-two experienced mentors representing all academic departments at a single institution were interviewed about perceived benefits, drawbacks, and their willingness to participate in team mentoring. Responses were analyzed with qualitative techniques using grounded theory and a comparative analytic strategy. Results: Faculty noted academic pursuits in medicine usually occur within, and not across, specialties; thus, multidisciplinary team mentoring would require coordinating diverse work schedules, additional meetings, and greater time commitments. Other challenges included ensuring breadth of expertise without redundancy, skillfully managing group dynamics, and ensuring there is one decision-maker. Potential drawbacks for mentees included reluctance to voice preferences and forge unique paths, perceived necessity to simultaneously please many mentors, and less likelihood of establishing a professional bond with any particular mentor. Conclusions: Faculty recommended caution before embracing team mentoring models. An acceptable alternative might be a hybrid model with a primary mentor at the helm and a selected group of co-mentors committed to a multidisciplinary effort. This model requires training and professional development for primary mentors.

8.
J Orthop Case Rep ; 11(3): 37-41, 2021 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-34239825

RESUMO

INTRODUCTION: Tumor-induced osteomalacia (TIO) is a rare paraneoplastic disorder caused by tumors that produce fibroblast growth factor 23 (FGF23) resulting in phosphate wasting and inadequate bone mineralization. Complete resection of the tumor can be curative. However, these tumors are typically difficult to find anatomically due to small size and location. CASE REPORT: We present the case of a patient who presented for evaluation of recurrent fractures and hypophosphatemia in the setting of elevated FGF23 suggestive of TIO. 68Gallium-DOTATATE revealed multiple somatostatin avid lesions in several ribs, left acetabulum, sacrum, right tibia, and feet, some of which appeared with fracture on computed tomography scan, initially concerning for metastatic disease. However, the lesion in acetabulum was considered the culprit tumor given its remarkably higher maximum standard uptake values. Complete surgical removal of the FGF23-secreting tumor led to cure of this disease. CONCLUSION: This case report highlights the challenges with functional imaging differentiating fractures from the culprit lesion and reports on a novel surgical technique that allowed for surgical cure while preserving the hip joint.

9.
Acad Med ; 96(7): 1010-1012, 2021 07 01.
Artigo em Inglês | MEDLINE | ID: mdl-33298694

RESUMO

PROBLEM: Medical education academies have been instrumental in providing greater recognition of and promotion for clinician-educators. However, producing education scholarship is essential for clinician-scholar-educator career advancement. Grant funding for education research and protected time to produce scholarship are still lacking for interested physicians, in part due to institutional budget constraints and competing priorities. APPROACH: The Hospital for Special Surgery Academy of Rheumatology Medical Educators was founded in 2011 to promote education scholarship through grants awarded to educators interested in research. Educators were asked to submit proposals aimed at the development of new teaching programs and curricular change. Selected applicants received up to $50,000 per year for one year. Grant money was obtained through directed fundraising from donors. Information from annual grant updates and survey responses from grant recipients in 2017 were used to assess the academy's effectiveness. OUTCOMES: Since 2012, 32 grants have been awarded, totaling $954,045 in funding. Recipients have produced national meeting abstracts, posters, oral presentations, and manuscripts and created unique curricula and electronic learning tools for medical students, residents, fellows, faculty, and patients. Four educators with demonstrated interest and research outcomes were identified during the pilot and received additional funding and support from a dedicated education research assistant. NEXT STEPS: The academy and the innovations grants program highlight the talents of under-supported and under-recognized teaching faculty by allowing them to distinguish themselves academically as clinician-scholar-educators. The success of these educators emphasizes the clear advantages of a formalized structure to achieve the hospital's education goals. Next steps include providing support for a rheumatology fellow to develop an education research career rather than one in bench, clinical, or translational research.


Assuntos
Academias e Institutos/organização & administração , Pesquisa Biomédica/economia , Educação Médica/métodos , Hospitais Especializados/economia , Reumatologia/educação , Pesquisa Biomédica/estatística & dados numéricos , Currículo/estatística & dados numéricos , Bolsas de Estudo/economia , Feminino , Hospitais Especializados/organização & administração , Humanos , Aprendizagem , Masculino , Tutoria/economia , Cidade de Nova Iorque , Médicos/estatística & dados numéricos , Estudantes de Medicina/estatística & dados numéricos , Apoio ao Desenvolvimento de Recursos Humanos/economia
10.
Arthritis Care Res (Hoboken) ; 72(9): 1282-1288, 2020 09.
Artigo em Inglês | MEDLINE | ID: mdl-31309733

RESUMO

OBJECTIVE: To evaluate the longitudinal responsiveness (sensitivity to change) of the Patient-Reported Outcomes Measurement Information System (PROMIS) Global Health Short Form (PROMIS10) in outpatients with systemic lupus erythematosus (SLE). METHODS: Outpatients with SLE who were receiving care at an academic medical center completed the PROMIS10 at 2 visits that were a minimum of 1 month apart. Responsiveness of the PROMIS10 global physical and mental health domains to Patient-Reported improvement or deterioration of health status was evaluated, as measured by standard validated instruments. Effect sizes of changes in PROMIS10 scores between visits were evaluated using Kruskal-Wallis testing. RESULTS: A total of 223 SLE patients enrolled and completed baseline surveys, with 186 (83.4%) completing a second set of questionnaires. The PROMIS10 demonstrated mild-to-moderate responsiveness to Patient-Reported improvement (effect size 0.29) and worsening (effect sizes -0.27 and -0.54) of health status for both global physical health and global mental health. Changes in the PROMIS10 correlated poorly with changes in physician-reported measures of disease activity. CONCLUSION: The PROMIS10 showed responsiveness over time to Patient-Reported changes in SLE health status, but not physician-assessed changes. These data suggest that the PROMIS10 can be used to efficiently measure and monitor important aspects of the SLE patient experience that are not captured by standard physician-derived metrics. Further studies are needed to evaluate the role of the PROMIS10 in optimizing longitudinal disease management in SLE and to determine its responsiveness in other chronic health conditions.


Assuntos
Lúpus Eritematoso Sistêmico/psicologia , Saúde Mental , Qualidade de Vida , Adulto , Idoso , Feminino , Nível de Saúde , Humanos , Masculino , Pessoa de Meia-Idade , Pacientes Ambulatoriais , Medidas de Resultados Relatados pelo Paciente , Autorrelato , Inquéritos e Questionários , Adulto Jovem
11.
Arthritis Rheumatol ; 72(5): 849-859, 2020 05.
Artigo em Inglês | MEDLINE | ID: mdl-31762219

RESUMO

OBJECTIVE: Autoimmune disease is an emerging condition among persons exposed to the September 11, 2001 attack on the World Trade Center (WTC). Components of the dust cloud resulting from the collapse of the WTC have been associated with development of a systemic autoimmune disease, as has posttraumatic stress disorder (PTSD). We undertook this study to determine whether dust exposure and PTSD were associated with an increased risk of systemic autoimmune disease in a 9/11-exposed cohort. METHODS: Among 43,133 WTC Health Registry enrollees, 2,786 self-reported having a post-9/11 systemic autoimmune disease. We obtained informed consent to review medical records to validate systemic autoimmune disease diagnoses for 1,041 enrollees. Diagnoses of systemic autoimmune diseases were confirmed by classification criteria, rheumatologist diagnosis, or having been prescribed systemic autoimmune disease medication. Controls were enrollees who denied having an autoimmune disease diagnosis (n = 37,017). We used multivariable log-binomial regression to examine the association between multiple 9/11 exposures and risk of post-9/11 systemic autoimmune disease, stratifying by responders (rescue, recovery, and clean-up workers) and community members (e.g., residents, area workers). RESULTS: We identified 118 persons with systemic autoimmune disease. Rheumatoid arthritis was most frequent (n = 71), followed by SjÓ§gren's syndrome (n = 22), systemic lupus erythematosus (n = 20), myositis (n = 9), mixed connective tissue disease (n = 7), and scleroderma (n = 4). Among 9/11 responders, those with intense dust cloud exposure had almost twice the risk of systemic autoimmune disease (adjusted risk ratio 1.86 [95% confidence interval 1.02-3.40]). Community members with PTSD had a nearly 3-fold increased risk of systemic autoimmune disease. CONCLUSION: Intense dust cloud exposure among responders and PTSD among community members were associated with a statistically significant increased risk of new-onset systemic autoimmune disease. Clinicians treating 9/11 survivors should be aware of the potential increased risk of systemic autoimmune disease in this population.


Assuntos
Doenças Autoimunes/epidemiologia , Poeira , Ataques Terroristas de 11 de Setembro , Transtornos de Estresse Pós-Traumáticos/epidemiologia , Adulto , Doenças Autoimunes/etiologia , Feminino , Humanos , Estudos Longitudinais , Masculino , Pessoa de Meia-Idade , Cidade de Nova Iorque/epidemiologia , Estudos Prospectivos , Medição de Risco , Transtornos de Estresse Pós-Traumáticos/etiologia
12.
Eur J Rheumatol ; 6(4): 207-211, 2019 10.
Artigo em Inglês | MEDLINE | ID: mdl-31657703

RESUMO

OBJECTIVE: iBook on Antiphospholipid Syndrome (APS) did not exist before our work, and hence the utility of an Apple iBook as a teaching method in APS for medical students has never been assessed. Our objective was to evaluate medical students' improvement of knowledge and satisfaction with an interactive APS iBook, in comparison with conventional teaching methods. METHODS: An iBook designer with the guidance of a medical team developed the APS iBook in both French and English. Second-year medical students, naïve of APS knowledge, were enrolled from two institutions. For the "teaching intervention", participants were randomly assigned to three groups: a) APS iBook with interactive capability; b) printed copy of the APS iBook material; and c) classroom lecture presentation of the APS iBook material by a physician-scientist experienced in APS. The participants filled a standardized medical questionnaire about APS before and after teaching interventions to determine the relative change of knowledge. Participants were asked to fill out a standardized satisfaction survey. After 20 weeks of the intervention, recall capability of students was tested. RESULTS: A total of 233 second-year medical students were enrolled (iBook group: 73; print group: 79, and lecture group: 81). Relative change of knowledge was not different between the iBook group and the printed material group; additionally, it was significantly higher in the lecture group than the two other methods. Satisfaction was significantly higher in both the lecture and the iBook groups than the print group, on several dimensions including overall quantitative satisfaction, subjective enhanced knowledge, interactivity, quality of content, comprehensibility, and pleasure of learning. Recall capability of students (n=109, 47%) was not significantly different among groups. CONCLUSION: The APS iBook is as effective as printed material in improving medical student's knowledge, although a classroom lecture was the most effective method when compared to self-learning methods. Among self-learning methods, medical students are more satisfied with the APS iBook, whereas the recall capability was not different among groups. These results suggest that the APS iBook will help medical students in their curriculum and increase the awareness of APS among the community.

13.
J Contin Educ Health Prof ; 39(1): 29-35, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-30614956

RESUMO

INTRODUCTION: Continuing education is necessary to foster new and effective research mentoring skills. We asked faculty about their research mentoring practices and what would support their skills and abilities as ongoing and effective research mentors. METHODS: Twenty-two experienced mentors were interviewed and asked about perceived areas for improvement, and challenges and facilitators to continued research mentoring. Responses were analyzed with qualitative techniques using semistructured interviews, grounded theory, and a constant comparative analytic strategy. RESULTS: The average time since the completion of the doctoral degree was 26 years. Twenty-one participants believed that more comprehensive institutional acknowledgment for their efforts would enhance research mentoring. This specifically included acknowledging their time spent and service (ie, effort) in multiple in-person and behind-the-scenes tasks. These research mentoring efforts were largely viewed as overlooked by the traditional focus on the achievement of tangible outcomes. Participants thought that a formal plan to organize research mentoring (such as a mentor's charter, and continuing education tailored to both novice and experienced research mentors) was needed to promote evolution of skills and documentation of time and service. Possible methods to support research mentors were suggested and included financial support for travel to national meetings, assistance in developing new projects, and consideration of mentoring activities in the process for academic promotion. DISCUSSION: Research mentors wanted their achievements, time spent, and service (ie, effort) to be acknowledged by the institution. A formal written mentoring charter and corresponding continuing education could facilitate acknowledging achievements, time, and service and thus help to sustain academic research mentoring.


Assuntos
Retroalimentação , Tutoria/métodos , Mentores/psicologia , Pesquisadores/psicologia , Teoria Fundamentada , Humanos , Entrevistas como Assunto/métodos , Tutoria/tendências , Pesquisa Qualitativa , Pesquisadores/educação , Pesquisadores/normas
14.
J Rheumatol ; 45(3): 397-404, 2018 03.
Artigo em Inglês | MEDLINE | ID: mdl-29419473

RESUMO

OBJECTIVE: To assess the feasibility, validity, and reliability of the Patient Reported Outcomes Measurement Information System Global Health Short Form (PROMIS10) in outpatients with systemic lupus erythematosus (SLE). METHODS: SLE outpatients completed PROMIS10, Medical Outcomes Study Short Form-36 (SF-36), LupusQoL-US, and selected PROMIS computerized adaptive tests (CAT) at routine visits at an SLE Center of Excellence. Construct validity was evaluated by correlating PROMIS10 physical and mental health scores with PROMIS CAT, legacy instruments, and physician-derived measures of disease activity and damage. Test-retest reliability was determined among subjects reporting stable SLE activity at 2 assessments 1 week apart using intraclass correlation coefficients (ICC). RESULTS: A diverse cohort of 204 out of 238 patients with SLE (86%) completed survey instruments. PROMIS10 physical health scores strongly correlated with physical function, pain, and social health domains in PROMIS CAT, SF-36, and LupusQoL, while mental health scores strongly correlated with PROMIS depression CAT, SF-36, and LupusQoL mental health domains (Spearman correlations ≥ 0.70). Active arthritis, comorbid fibromyalgia (FM), and anxiety were associated with worse PROMIS10 scores, but sociodemographic factors and physician-assessed flare status were not. Test-retest reliability for PROMIS10 physical and mental health scores was high (ICC ≥ 0.85). PROMIS10 required < 2 minutes to complete. CONCLUSION: PROMIS10 is valid and reliable, and can efficiently screen for impaired physical function, pain, and emotional distress in outpatients with SLE. With strong correlations to LupusQoL and SF-36 but significantly reduced responder burden, PROMIS10 is a promising tool for measuring patient-reported outcomes in routine SLE clinical care and value-based healthcare initiatives.


Assuntos
Lúpus Eritematoso Sistêmico/fisiopatologia , Lúpus Eritematoso Sistêmico/psicologia , Avaliação de Resultados em Cuidados de Saúde/métodos , Pacientes Ambulatoriais/psicologia , Medidas de Resultados Relatados pelo Paciente , Adulto , Sintomas Afetivos/diagnóstico , Idoso , Estudos de Coortes , Avaliação da Deficiência , Estudos de Viabilidade , Feminino , Saúde Global , Humanos , Modelos Lineares , Masculino , Saúde Mental , Pessoa de Meia-Idade , Análise Multivariada , Dor/diagnóstico , Reprodutibilidade dos Testes , Índice de Gravidade de Doença , Inquéritos e Questionários , Adulto Jovem
15.
Chest ; 153(1): 114-123, 2018 01.
Artigo em Inglês | MEDLINE | ID: mdl-29066387

RESUMO

BACKGROUND: Sarcoidosis is believed to represent a genetically primed, abnormal immune response to an antigen exposure or inflammatory trigger, with both genetic and environmental factors playing a role in disease onset and phenotypic expression. In a population of firefighters with post-World Trade Center (WTC) 9/11/2001 (9/11) sarcoidosis, we have a unique opportunity to describe the clinical course of incident sarcoidosis during the 15 years postexposure and, on average, 8 years following diagnosis. METHODS: Among the WTC-exposed cohort, 74 firefighters with post-9/11 sarcoidosis were identified through medical records review. A total of 59 were enrolled in follow-up studies. For each participant, the World Association of Sarcoidosis and Other Granulomatous Diseases organ assessment tool was used to categorize the sarcoidosis involvement of each organ system at time of diagnosis and at follow-up. RESULTS: The incidence of sarcoidosis post-9/11 was 25 per 100,000. Radiographic resolution of intrathoracic involvement occurred in 24 (45%) subjects. Lung function for nearly all subjects was within normal limits. Extrathoracic involvement increased, most prominently joints (15%) and cardiac (16%) involvement. There was no evidence of calcium dysmetabolism. Few subjects had ocular (5%) or skin (2%) involvement, and none had beryllium sensitization. Most (76%) subjects did not receive any treatment. CONCLUSIONS: Extrathoracic disease was more prevalent in WTC-related sarcoidosis than reported for patients with sarcoidosis without WTC exposure or for other exposure-related granulomatous diseases (beryllium disease and hypersensitivity pneumonitis). Cardiac involvement would have been missed if evaluation stopped after ECG, 48-h recordings, and echocardiogram. Our results also support the need for advanced cardiac screening in asymptomatic patients with strenuous, stressful, public safety occupations, given the potential fatality of a missed diagnosis.


Assuntos
Bombeiros , Exposição Ocupacional/efeitos adversos , Sarcoidose/epidemiologia , Ataques Terroristas de 11 de Setembro , Adulto , Seguimentos , Humanos , Masculino , Pessoa de Meia-Idade , Cidade de Nova Iorque/epidemiologia
16.
J Rheumatol ; 44(7): 1024-1031, 2017 07.
Artigo em Inglês | MEDLINE | ID: mdl-28412708

RESUMO

OBJECTIVE: The aims of this study were to assess the construct validity and the test-retest reliability of Patient Reported Outcomes Measurement Information System (PROMIS) computerized adaptive tests (CAT) in patients with systemic lupus erythematosus (SLE). METHODS: Adults with SLE completed the Medical Outcomes Study Short Form-36, LupusQoL-US version ("legacy instruments"), and 14 selected PROMIS CAT. Using Spearman correlations, PROMIS CAT were compared with similar domains measured with legacy instruments. CAT were also correlated with the Safety of Estrogens in Lupus Erythematosus National Assessment-Systemic Lupus Erythematosus Disease Activity Index (SELENA-SLEDAI) disease activity and the Systemic Lupus International Collaborating Clinics/American College of Rheumatology Damage Index (SDI) scores. Test-retest reliability was evaluated using ICC. RESULTS: There were 204 outpatients with SLE enrolled in the study and 162 completed a retest. PROMIS CAT showed good performance characteristics and moderate to strong correlations with similar domains in the 2 legacy instruments (r = -0.49 to 0.86, p < 0.001). However, correlations between PROMIS CAT and the SELENA-SLEDAI disease activity and SDI were generally weak and statistically insignificant. PROMIS CAT test-retest ICC were good to excellent, ranging from 0.72 to 0.88. CONCLUSION: To our knowledge, these data are the first to show that PROMIS CAT are valid and reliable for many SLE-relevant domains. Importantly, PROMIS scores did not correlate well with physician-derived measures. This disconnect between objective signs and symptoms and the subjective patient disease experience underscores the crucial need to integrate patient-reported outcomes into clinical care to ensure optimal disease management.


Assuntos
Lúpus Eritematoso Sistêmico/diagnóstico , Lúpus Eritematoso Sistêmico/psicologia , Medidas de Resultados Relatados pelo Paciente , Satisfação do Paciente , Qualidade de Vida , Adulto , Idoso , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Reprodutibilidade dos Testes , Autorrelato , Índice de Gravidade de Doença , Participação Social , Inquéritos e Questionários , Adulto Jovem
17.
Arthritis Care Res (Hoboken) ; 68(11): 1591-1597, 2016 11.
Artigo em Inglês | MEDLINE | ID: mdl-26867031

RESUMO

OBJECTIVE: The Rheumatology Research Foundation's Clinician Scholar Educator (CSE) award is a 3-year career development award supporting medical education research while providing opportunities for mentorship and collaboration. Our objective was to document the individual and institutional impact of the award since its inception, as well as its promise to strengthen the subspecialty of rheumatology. METHODS: All 60 CSE Award recipients were surveyed periodically. Fifty-six of those 60 awardees (90%) responded to requests for survey information that included post-award activities, promotions, and further funding. Data were also collected from yearly written progress reports for each grant. RESULTS: Of the total CSE recipients to date, 48 of 60 (80%) are adult rheumatologists, 11 of 60 (18%) are pediatric rheumatologists, and 1 is an adult and pediatric rheumatologist. Two-thirds of survey respondents spend up to 30% of their total time in educational activities, and one-third spend greater than 30%. Thirty-one of the 60 CSE recipients (52%) have published a total of 86 medical education papers. Twenty-six of 52 (50%) had received an academic promotion following the award. Eleven awardees earned advanced degrees. CONCLUSION: We describe the creation and evolution of a grant program from a medical subspecialty society foundation and the impact on producing education research, individual identity formation, and ongoing support for educators. This community of rheumatology scholar educators now serves as an important resource at the national level for the American College of Rheumatology and its membership. We believe that this grant may serve as a model for other medical societies that want to promote education scholarship and leadership within their specialties.


Assuntos
Distinções e Prêmios , Pesquisa Biomédica/educação , Reumatologia/educação , Sociedades Médicas/história , Adulto , Bolsas de Estudo , Feminino , História do Século XXI , Humanos , Liderança , Masculino , Reumatologia/história
18.
Clin Rheumatol ; 35(8): 2093-2099, 2016 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-26585177

RESUMO

The NYC Rheumatology Objective Structured Clinical Examination (NYC-ROSCE) is held annually to assess fellow competencies. We recently redesigned our OSCE to better assess subspecialty trainee communication skills and professionalism by developing scenarios in which the patients encountered were psychosocially or medically complex. The objective of this study is to identify which types of verbal and non-verbal skills are most important in the perception of professionalism in the patient-physician interaction. The 2012-2013 NYC-ROSCEs included a total of 53 fellows: 55 MD evaluators from 7 NYC rheumatology training programs (Hospital for Special Surgery-Weill Cornell (HSS), SUNY/Downstate, NYU, Einstein, Columbia, Mount Sinai, and North Shore/Long Island Jewish (NSLIJ)), and 55 professional actors/standardized patients participated in 5 stations. Quantitative fellow performance assessments were made on the following: maintaining composure; partnering with the patient; honesty; professionalism; empathy; and accountability. Free-text comments were solicited regarding specific strengths and weaknesses. A total of 53/53 eligible (100 %) fellows were evaluated. MD evaluators rated fellows lower for professionalism than did the standardized patients (6.8 ± 0.6 vs. 7.4 ± 0.8, p = 0.05), suggesting that physicians and patients view professionalism somewhat differently. Fellow self-evaluations for professionalism (6.6 ± 1.2) were concordant with those of the MD evaluators. Ratings of empathy by fellows themselves (6.6 ± 1.0), MD evaluators (6.6 ± 0.7), and standardized patients (6.6 ± 1.1) agreed closely. Jargon use, frequently cited by evaluators, showed a moderate association with lower professionalism ratings by both MD evaluators and patients. Psychosocially challenging patient encounters in the NYC-ROSCE permitted critical assessment of the patient-centered traits contributing to impressions of professionalism and indicate that limiting medical jargon is an important component of the competency of professionalism.


Assuntos
Competência Clínica/normas , Empatia , Profissionalismo/normas , Reumatologia/educação , Competência Clínica/estatística & dados numéricos , Bolsas de Estudo , Humanos , Modelos Lineares , Autoavaliação (Psicologia) , Estados Unidos
19.
Mayo Clin Proc ; 91(1): 23-32, 2016 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-26682920

RESUMO

OBJECTIVE: To estimate the incidence of selected systemic autoimmune diseases (SAIDs) in approximately 14,000 male rescue/recovery workers enrolled in the Fire Department of the City of New York (FDNY) World Trade Center (WTC) Health Program and to compare FDNY incidence to rates from demographically similar men in the Rochester Epidemiology Project (REP), a population-based database in Olmsted County, Minnesota. PATIENTS AND METHODS: We calculated incidence for specific SAIDs (rheumatoid arthritis, psoriatic arthritis, systemic lupus erythematosus, and others) and combined SAIDs diagnosed from September 12, 2001, through September 11, 2014, and generated expected sex- and age-specific rates based on REP rates. Rates were stratified by level of WTC exposure (higher vs lower). Standardized incidence ratios (SIRs), which are the ratios of the observed number of cases in the FDNY group to the expected number of cases based on REP rates, and 95% CIs were calculated. RESULTS: We identified 97 SAID cases. Overall, FDNY rates were not significantly different from expected rates (SIR, 0.97; 95% CI, 0.77-1.21). However, the lower WTC exposure group had 9.9 fewer cases than expected, whereas the higher WTC exposure group had 7.7 excess cases. CONCLUSION: Most studies indicate that the healthy worker effect reduces the association between exposure and outcome by about 20%, which we observed in the lower WTC exposure group. Overall rates masked differences in incidence by level of WTC exposure, especially because the higher WTC exposure group was relatively small. Continued surveillance for early detection of SAIDs in high WTC exposure populations is required to identify and treat exposure-related adverse effects.


Assuntos
Artrite Reumatoide , Bombeiros/estatística & dados numéricos , Lúpus Eritematoso Sistêmico , Exposição Ocupacional , Adulto , Fatores Etários , Artrite Reumatoide/diagnóstico , Artrite Reumatoide/epidemiologia , Artrite Reumatoide/etiologia , Diagnóstico Precoce , Humanos , Lúpus Eritematoso Sistêmico/diagnóstico , Lúpus Eritematoso Sistêmico/epidemiologia , Lúpus Eritematoso Sistêmico/etiologia , Masculino , Pessoa de Meia-Idade , Minnesota/epidemiologia , Cidade de Nova Iorque , Exposição Ocupacional/efeitos adversos , Exposição Ocupacional/estatística & dados numéricos , Trabalho de Resgate/estatística & dados numéricos , Medição de Risco , Ataques Terroristas de 11 de Setembro/estatística & dados numéricos , Fatores Sexuais
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