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1.
ACR Open Rheumatol ; 1(1): 3, 2019 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-31777775
2.
ACR Open Rheumatol ; 1(6): 366-372, 2019 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-31777816

RESUMO

Objective: Reduced physical function and frailty are common in rheumatoid arthritis (RA). However, relationships between frailty and changes in physical function and disease activity over time in RA are unknown. We tested whether frailty is a risk factor for worsening patient-reported physical function and disease activity in RA. Methods: Adults from a longitudinal RA cohort (N = 124) participated. By using an established frailty definition, individuals with three or more of the following deficits were considered frail: 1) body mass index less than or equal to 18.5, 2) low grip strength, 3) severe fatigue, 4) slow 4-m walking speed, and 5) low physical activity. Individuals with one to two or zero deficits were considered "pre-frail" or "robust," respectively. Physical function and RA disease activity were assessed by the Health Assessment Questionnaire (HAQ) and Rheumatoid Arthritis Disease Activity Index (RADAI), respectively, at baseline and follow-up 2 years later. Regression analyses modeled associations of frailty status with change in HAQ and RADAI scores between baseline and follow-up with and without controlling for covariates. Associations of individual frailty components with change in HAQ and RADAI scores were also examined. Results: Among adults with RA, baseline frailty status predicted significant increases, or worsening, in HAQ (ß: 0.4; 95% confidence interval: 0.1-0.8; P < 0.01) but not RADAI scores (ß: 0.5; 95% confidence interval: -0.4 to 1.5; P > 0.05) between baseline and follow-up in fully adjusted models. Fatigue was an important contributor to this effect. Conclusion: Frailty may be an important risk factor for reduced physical function over time in RA. Future studies should address whether interventions to reduce frailty improve physical function in RA.

3.
Nat Commun ; 10(1): 3902, 2019 08 29.
Artigo em Inglês | MEDLINE | ID: mdl-31467281

RESUMO

Systemic lupus erythematous (SLE) is a heterogeneous autoimmune disease in which outcomes vary among different racial groups. Here, we aim to identify SLE subgroups within a multiethnic cohort using an unsupervised clustering approach based on the American College of Rheumatology (ACR) classification criteria. We identify three patient clusters that vary according to disease severity. Methylation association analysis identifies a set of 256 differentially methylated CpGs across clusters, including 101 CpGs in genes in the Type I Interferon pathway, and we validate these associations in an external cohort. A cis-methylation quantitative trait loci analysis identifies 744 significant CpG-SNP pairs. The methylation signature is enriched for ethnic-associated CpGs suggesting that genetic and non-genetic factors may drive outcomes and ethnic-associated methylation differences. Our computational approach highlights molecular differences associated with clusters rather than single outcome measures. This work demonstrates the utility of applying integrative methods to address clinical heterogeneity in multifactorial multi-ethnic disease settings.


Assuntos
Biologia Computacional , Grupos Étnicos/genética , Genômica , Lúpus Eritematoso Sistêmico/genética , Família Multigênica , Estudos de Coortes , Metilação de DNA , Epigenômica , Feminino , Estudos de Associação Genética , Genótipo , Humanos , Masculino , Locos de Características Quantitativas , Índice de Gravidade de Doença , Estados Unidos
4.
Artigo em Inglês | MEDLINE | ID: mdl-31421030

RESUMO

OBJECTIVES: Fatigue is common among individuals with systemic lupus erythematosus (SLE) but causes are not well understood. We examined perceived stress and depressive symptoms as predictors of fatigue in SLE. METHODS: Data from two years of the Lupus Outcomes Study (n=650), obtained through annual structured interviews, were used. Fatigue was measured with the SF-36 Vitality scale along with a variety of self-report measures of disease, depression, and stress. Multivariate linear regression models examined predictors of changes in fatigue. Model 1 tested the association of Time 1(T1) depression with Time 2(T2) fatigue; Model 2 added T1 perceived stress to Model 1; and final models added T1-T2 decrease in stress. All analyses controlled for T1 fatigue, age, sex, self-report of fibromyalgia, pain, and SLE duration, activity, and damage. RESULTS: Mean (SD) age was 51(12) years, 92% were women, 68% were Caucasian. Mean (SD) SF-36 Fatigue score was 55(24). T1 depression significantly predicted T2 fatigue. When T1 stress was added, stress (ß 1.7, 95% CI [1.1, 2.2], p <0.0001) significantly predicted T2 fatigue but depression was no longer significance. The addition of T1-T2 decrease in stress was associated with clinically meaningful decline in fatigue (ß -11.8, 95% CI [15.6, -8.9], p <0.0001). CONCLUSION: While depressive symptoms initially predicted subsequent fatigue, the effects were mediated by stress. A decrease in stress, in addition, was associated with a clinically meaningful decrease in fatigue. These results suggest that perceived stress plays an important role in SLE fatigue and may be an important focus of interventions for fatigue.

5.
Artigo em Inglês | MEDLINE | ID: mdl-31058460

RESUMO

OBJECTIVE: We examined quality measures for screening, diagnosis and treatment of lupus nephritis (LN) among participants of the California Lupus Epidemiology Study (CLUES) across 25 different clinical sites to identify gaps in quality of care. METHODS: Data from 250 lupus participants was analyzed across three sources (medical records, physician examination, and patient interviews). Overall performance on eight quality measures was calculated separately for participants with and without LN. We used generalized estimating equations in which the outcome was performance on measures, adjusting for participant demographics, lupus disease severity and practice characteristics. RESULTS: Of 148 patients without LN, 42% had screening labs for nephritis, 38% had lupus activity serologies and 81% had blood pressure checked every 6 months. Of 102 LN patients, 67% had a timely kidney biopsy, at least 81% had appropriate treatment and 78% achieved target blood pressure within 1 year of diagnosis. Overall performance in participants across quality measures was 54% (no LN) and 80% (LN). Significantly higher overall performance for screening measures for LN was seen at academic (63.4-73%) versus community clinics (37.9-38.4%). Similarly, among those with LN, higher performance in academic (84.1-85.2%) versus community clinics (54.8-60.2%) was observed for treatment measures. CONCLUSION: In this quality of care analysis across 25 diverse clinical settings, we found relatively high performance on measures for management of LN. However, future work should focus on bridging the gaps in lupus quality of care for patients without nephritis, particularly in community settings. This article is protected by copyright. All rights reserved.

6.
Artigo em Inglês | MEDLINE | ID: mdl-31069933

RESUMO

PURPOSE: Adverse childhood experiences (ACEs) are associated with poor adult health and immune dysregulation. The impact of ACEs on patients with autoimmune disease is unknown. We compared the prevalence of ACEs in Systemic Lupus Erythematosus (SLE) patients to population-based survey estimate and investigated relationships between ACEs and SLE outcomes. METHODS: Data derive from the California Lupus Epidemiology Study (CLUES), a sample of adult SLE patients. Participants completed a 10-item ACE questionnaire covering 3 domains (abuse, neglect, household challenges). We estimated ACEs prevalence in 269 CLUES participants compared to 2015 California Behavioral Risk Factor Surveillance System (BRFSS) geographically matched respondents, standardized (age, sex, race/ethnicity) to CLUES participant characteristics. We examined associations for patient-reported and physician-assessed health status measures with overall ACE levels and domains using multivariable linear regression, controlling for socio-demographics, nephritis, and childhood onset SLE. RESULTS: Though specific domains varied, overall ACE levels were similar for CLUES and BRFSS respondents. Among SLE patients, 63.2% had ≥1 ACE and 19.3% had ≥4. ACEs were more prevalent in those who were older, women, Latino or African American, without college degrees, and with lupus nephritis. In adjusted models, higher ACE levels and ACE domains were associated with worse patient-reported SLE activity, depression, and health status, but were not significantly associated with physician-assessed SLE activity, damage, or severity. CONCLUSIONS: Given the association between ACE levels and important patient-reported outcomes in SLE, our study reinforces the need for prevention of ACEs in childhood and for clinical interventions to promote resilience among adults who have experienced ACEs. This article is protected by copyright. All rights reserved.

7.
J Heart Lung Transplant ; 38(7): 699-707, 2019 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-31005571

RESUMO

BACKGROUND: Frailty is common in adults with advanced lung disease and is associated with death before and after lung transplantation. We aimed to determine whether frailty changes from before to after the lung transplant. METHODS: In a single-center, prospective cohort study among adults undergoing lung transplantation from 2010 to 2017, we assessed frailty by the Short Physical Performance Battery (SPPB; higher scores reflect less frailty) and Fried Frailty Phenotype (FFP; higher scores reflect greater frailty) before and repeatedly up to 36 months after transplant. We tested for changes in frailty scores over time using segmented mixed effects models, adjusting for age, sex, and diagnosis. We quantified the proportion of subjects transitioning between frailty states (frail vs not frail) from before to after the transplant. RESULTS: In 246 subjects, changes in frailty occurred within the first 6 post-operative months and remained stable thereafter. The overall change in frailty was attributable to improvements among those subjects who were frail before transplant. They experienced a 5.1-point improvement in SPPB (95% confidence interval [CI] 4.6-5.7) and a 1.8-point improvement in FFP (95% CI -2.1 to -1.6) during the early period. Frailty by SPPB and FFP did not change in those who were not frail before transplant. Approximately 84% of survivors who were frail before transplant became not frail after transplant. CONCLUSIONS: Pre-operative frailty resolves in many patients after lung transplantation. Because a large proportion of frailty may be attributable to advanced lung disease, frailty alone should not be an absolute contraindication to transplantation.

8.
Holist Nurs Pract ; 33(2): 71-79, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-30747775

RESUMO

Mind-body exercises such as yoga offer patients with rheumatoid arthritis (RA) a symptom management strategy for improving physical and mental health. Studies have evaluated yoga to manage symptoms of RA and improve physical function; however, none has examined the relationship between yoga and work status in adults with RA. The objective was to describe differences in RA symptomatology, physical function scores, and work status between adults with RA who participate in yoga and those who do not. This cross-sectional study surveyed adults with rheumatologist-diagnosed RA regarding yoga use in the past year, symptoms, physical function, and work status. Differences between yoga and non-yoga participation groups were assessed with 2-sided t tests or Pearson χ tests. Multivariate linear regression analyses were conducted to identify significant associations between yoga participation and primary outcomes. The sample included 398 adults with RA; 88% were females, 66% were white, mean age 61.8 years, mean disease duration 24.8 years; 10.6% participated in yoga. Vinyasa, Bikram, Hatha, Iyengar, and restorative yoga styles were practiced, mostly in a group setting. Yoga participants were significantly more likely to work full-time, less likely to be unable to work due to disability, and had better physical function. These findings characterize yoga practice and practitioners among adults with RA. In adults with RA, yoga participation is associated with full-time work status and better physical function than nonparticipation. This study adds additional information to the growing body of literature about adults with RA who practice yoga.


Assuntos
Artrite Reumatoide/terapia , Emprego/normas , Desempenho Físico Funcional , Ioga , Adulto , Idoso , Artrite Reumatoide/psicologia , Estudos Transversais , Emprego/estatística & dados numéricos , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Inquéritos e Questionários
9.
Arthritis Care Res (Hoboken) ; 71(1): 126-133, 2019 01.
Artigo em Inglês | MEDLINE | ID: mdl-29740985

RESUMO

OBJECTIVE: To determine whether obesity in women with systemic lupus erythematosus (SLE) is independently associated with worse patient-reported outcomes (PROs). METHODS: Data were derived from a prospective study of adult women with a diagnosis of SLE that was verified by medical record review. Two established definitions for obesity were used: fat mass index (FMI) ≥13 kg/m2 and body mass index (BMI) ≥30 kg/m2 . Dependent variables included 4 validated PROs: disease activity as assessed by the Systemic Lupus Activity Questionnaire (SLAQ), depressive symptoms as assessed by the Center for Epidemiologic Studies Depression Scale (CES-D), pain as assessed by the Short Form 36 (SF-36) pain subscale, and fatigue as assessed by the SF-36 vitality subscale. We used multivariable linear regression to evaluate the associations of obesity with PROs, while controlling for potential confounders (age, race, education, income, smoking, disease duration, disease damage, and prednisone use). RESULTS: The analysis included 148 participants, 32% of whom were obese. In the multivariate regression model, obesity was associated with worse scores for each PRO. Mean adjusted scores for the SLAQ and CES-D comparing obese versus non-obese participants were 14.8 versus 11.5 (P = 0.01) and 19.8 versus 13.1 (P < 0.01), respectively. The obese group also reported worse mean adjusted scores for pain (38.7 versus 44.2; P < 0.01) and fatigue (39.6 versus 45.2; P = 0.01). CONCLUSION: In a representative sample of women with SLE, obesity (as defined by both FMI and BMI) was independently associated with worse PROs, including disease activity, depressive symptoms, and symptoms of pain and fatigue. Obesity may represent a modifiable target for improving outcomes among obese women with SLE.


Assuntos
Índice de Massa Corporal , Lúpus Eritematoso Sistêmico/diagnóstico , Lúpus Eritematoso Sistêmico/epidemiologia , Obesidade/diagnóstico , Obesidade/epidemiologia , Medidas de Resultados Relatados pelo Paciente , Adulto , Estudos Transversais , Feminino , Humanos , Pessoa de Meia-Idade , Estudos Prospectivos
10.
Curr Rheumatol Rev ; 15(2): 90-98, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-30255761

RESUMO

BACKGROUND: Depression and anxiety are common neuropsychiatric complaints in patients with Systemic Lupus Erythematosus (SLE). While numerous studies have been performed to investigate the prevalence, impact, and associated factors of depression and anxiety, current literature presents mixed results. In particular, the prevalence of anxiety and depression varies substantially between studies due to methodological limitations, and heterogeneity in defining anxiety and depression, patient selection, and metrics used. Moreover, there is a lack of studies evaluating the validity, reliability, and interpretability of commonly used screening tools for depression and anxiety in SLE patients. RESULT AND CONCLUSION: Further investigations should aim to reach a consensus surrounding the role of controversial associated factors in depression and anxiety of SLE patients, while also focusing on the identification of novel factors that have not yet been highlighted in the literature.


Assuntos
Ansiedade/epidemiologia , Ansiedade/etiologia , Depressão/epidemiologia , Depressão/etiologia , Lúpus Eritematoso Sistêmico/psicologia , Adulto , Ansiedade/diagnóstico , Depressão/diagnóstico , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Prevalência
11.
Arthritis Care Res (Hoboken) ; 71(12): 1630-1639, 2019 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-30354017

RESUMO

OBJECTIVE: We examined psychometric performance of Patient-Reported Outcomes Measurement Information System (PROMIS) measures in a racially/ethnically and linguistically diverse cohort with systemic lupus erythematosus (SLE). METHODS: Data were from the California Lupus Epidemiology Study, a multiracial/multiethnic cohort of individuals with physician-confirmed SLE. The majority (n = 332) attended in-person research visits that included interviews conducted in English, Spanish, Cantonese, or Mandarin. Up to 12 PROMIS short forms were administered (depending on language availability). An additional 99 individuals completed the interview by phone only. Internal consistency was examined with Cronbach's alpha and item-total correlations. Correlations with the Short Form 36 subscales and both self-reported and physician-assessed disease activity assessed convergent validity. All analyses were repeated within each racial/ethnic group. Differences in scores by race/ethnicity were examined in bivariate analyses and by multiple regression analyses controlling for age, sex, disease duration, and disease damage and activity. RESULTS: The total sample was 30.0% white, 22.3% Hispanic, 10.9% African American, 33.7% Asian, and 3.0% other race/ethnicity. Seventy-seven percent of interviews were conducted in-person. Non-English interviews were conducted in 26.0% of the Hispanic subjects and 18.6% of the Asian subjects. Each scale demonstrated adequate reliability and validity overall and within racial/ethnic groups. Minimal floor effects were observed, but ceiling effects were noted. Missing item responses were minimal for most scales, except for items related to work. No differences were noted by mode of administration or by language of administration among Hispanics and Asians. After accounting for differences in disease status, age, and sex, few differences in mean scores between whites and other racial/ethnic groups were noted. CONCLUSION: PROMIS measures appear reliable and valid in persons with lupus across racial/ethnic groups.

12.
Arthritis Care Res (Hoboken) ; 71(7): 925-935, 2019 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-30099861

RESUMO

OBJECTIVE: Most studies that have evaluated patient-reported outcomes, such as those utilizing the Patient-Reported Outcomes Measurement Information System (PROMIS) Physical Function Short Form 10a (PF10a) in rheumatoid arthritis (RA), have been performed in white and English-speaking populations. The aim of our study was to assess the measurement properties of the PF10a in a racially/ethnically diverse population with RA and to determine the effect of non-English language proficiency, insurance status, and race/ethnicity on the validity and responsiveness of the PF10a. METHODS: Data were abstracted from electronic health records for all RA patients seen in a university-based rheumatology clinic between 2013 and 2017. We evaluated the use of the PF10a, floor and ceiling effects, and construct validity across categories of language preference, insurance, and race/ethnicity. We used standardized response means and linear mixed-effects models to evaluate the responsiveness of the PF10a to longitudinal changes in the Clinical Disease Activity Index (CDAI) across population subgroups. RESULTS: We included 595 patients in a cross-sectional analysis of validity and 341 patients in longitudinal responsiveness analyses of the PF10a. The PF10a had acceptable floor and ceiling effects and was successfully implemented. We observed good construct validity and responsiveness to changes in CDAI among white subjects, English speakers, and privately insured patients. However, constructs evaluated by the PF10a were less correlated with clinical measures among Chinese speakers and Hispanic subjects, and less sensitive to clinical improvements among Medicaid patients and Spanish speakers. CONCLUSION: While the PF10a has good measurement properties and is both practical and acceptable for implementation in routine clinical practice, we also found important differences across racial/ethnic groups and those with limited English proficiency that warrant further investigation.

13.
Arthritis Care Res (Hoboken) ; 71(8): 1028-1035, 2019 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-30144293

RESUMO

OBJECTIVE: Physician-assessed disease activity and damage predict mortality in systemic lupus erythematosus (SLE). Patient-reported outcomes (PROs) are known predictors of mortality in other chronic diseases, but this relationship has not been well examined in SLE. The aim of the present study was to assess whether PROs predict mortality in SLE. METHODS: Data were derived from the University of California at San Francisco Lupus Outcomes Study (n = 728). PROs (Medical Outcomes Study Short Form 36 [SF-36] subscales), self-rated health, and depression (Center for Epidemiologic Studies Depression scale [CES-D]) from 2007 (baseline data [T0]) were used to predict mortality (censored 2015). Univariate Cox regression analyses were completed for each PRO as a predictor of mortality, and multivariate Cox regression with covariates for each PRO separately. Covariates were age, sex, race/ethnicity, poverty, disease duration, disease activity (Systemic Lupus Activity Questionnaire), and damage (Brief Index of Lupus Damage). RESULTS: The mean ± SD age of patients was 50.6 ± 12.6 years. Ninety-two percent of patients were women and 68.5% were white. There were 71 deaths (9.1%). In univariate analyses, both the SF-36 physical component subscale score and self-rated health were associated with mortality, and the SF-36 mental health subscale and CES-D scores were not associated with mortality. In multivariate analyses, lower scores of SF-36 physical function at T0 independently predicted mortality after controlling for all other covariates (hazard ratio 0.97 [95% confidence interval 0.94-0.99]; P < 0.01). CONCLUSION: Patient-reported physical function independently predicted mortality in SLE, even after accounting for demographics (including poverty) and disease (duration, activity, and damage). Because PROs are easy to assess, they may be used to triage, track, and guide early interventions for those at high risk of mortality in SLE.

14.
MMWR Morb Mortal Wkly Rep ; 67(39): 1081-1087, 2018 Oct 05.
Artigo em Inglês | MEDLINE | ID: mdl-30286053

RESUMO

An estimated 54.4 million (22.7%) U.S. adults have doctor-diagnosed arthritis (1). A report in 2012 found that, among adults aged ≥45 years with arthritis, approximately one third reported having anxiety or depression, with anxiety more common than depression (2). Studies examining mental health conditions in adults with arthritis have focused largely on depression, arthritis subtypes, and middle-aged and older adults, or have not been nationally representative (3). To address these knowledge gaps, CDC analyzed 2015-2017 National Health Interview Survey (NHIS) data* to estimate the national prevalence of clinically relevant symptoms of anxiety and depression among adults aged ≥18 years with arthritis. Among adults with arthritis, age-standardized prevalences of symptoms of anxiety and depression were 22.5% and 12.1%, respectively, compared with 10.7% and 4.7% among adults without arthritis. Successful treatment approaches to address anxiety and depression among adults with arthritis are multifaceted and include screenings, referrals to mental health professionals, and evidence-based strategies such as regular physical activity and participation in self-management education to improve mental health.


Assuntos
Ansiedade/epidemiologia , Artrite/psicologia , Depressão/epidemiologia , Adolescente , Adulto , Idoso , Artrite/epidemiologia , Feminino , Inquéritos Epidemiológicos , Humanos , Masculino , Pessoa de Meia-Idade , Prevalência , Estados Unidos/epidemiologia , Adulto Jovem
15.
J Rheumatol ; 45(12): 1636-1642, 2018 12.
Artigo em Inglês | MEDLINE | ID: mdl-30219761

RESUMO

OBJECTIVE: Rheumatoid arthritis (RA) patients' adherence to disease-modifying antirheumatic drugs (DMARD) is often suboptimal. We examined associations among medication beliefs, self-efficacy, and adherence to medications in RA. METHODS: Data were from a longitudinal observational cohort of persons with RA. Subjects completed telephone interviews on self-reported adherence, self-efficacy, demographics, and the Beliefs about Medicines Questionnaire (BMQ), which assesses beliefs in necessity and beliefs about taking medication. Bivariate and multivariate logistic regression identified correlates of poor adherence to synthetic DMARD and prednisone as well as to biologic therapy, including medication concerns and necessity. RESULTS: There were 362 patients who reported taking a synthetic DMARD and/or prednisone. Of these, 14% and 21% reported poor adherence to oral DMARD or prednisone, and biologics, respectively. There were 64% who reported concern about taking medicines, 81% about longterm effects, and 47% about becoming too dependent on medicines. In multivariate analyses, the BMQ necessity score was independently associated with better adherence to oral DMARD or prednisone (adjusted OR 0.61, 95% CI 0.41-0.91), while self-efficacy was associated with greater odds of poor adherence to oral medications (adjusted OR 1.23, 95% CI 1.01-1.59). Beliefs in medicines and self-efficacy were not associated with adherence to biologics. CONCLUSION: In a diverse cohort of patients with RA, stronger beliefs in the necessity of medication were associated with better adherence to oral DMARD or prednisone, while higher self-efficacy was associated with poor adherence. Providers can play important roles in eliciting patient beliefs about medications to improve adherence and ultimately health outcomes.


Assuntos
Antirreumáticos/uso terapêutico , Artrite Reumatoide/psicologia , Produtos Biológicos/uso terapêutico , Conhecimentos, Atitudes e Prática em Saúde , Adesão à Medicação/psicologia , Autoeficácia , Adulto , Idoso , Artrite Reumatoide/tratamento farmacológico , Feminino , Humanos , Masculino , Pessoa de Meia-Idade
16.
Lupus Sci Med ; 5(1): e000279, 2018.
Artigo em Inglês | MEDLINE | ID: mdl-30167315

RESUMO

Inclusion of patient-reported outcomes is important in SLE clinical trials as they allow capture of the benefits of a proposed intervention in areas deemed pertinent by patients. We aimed to compare the measurement properties of health-related quality of life (HRQoL) measures used in adults with SLE and to evaluate their responsiveness to interventions in randomised controlled trials (RCTs). A systematic review was undertaken using full original papers in English identified from three databases: MEDLINE, EMBASE and PubMed. Studies describing the validation of HRQoL measures in English-speaking adult patients with SLE and SLE drug RCTs that used an HRQoL measure were retrieved. Twenty-five validation papers and 26 RCTs were included in the indepth review evaluating the measurement properties of 4 generic (Medical Outcomes Study Short-Form 36 (SF36), Patient Reported Outcomes Measurement Information System (PROMIS) item-bank, EuroQol-5D, and Functional Assessment of Chronic Illness Therapy-Fatigue) and 3 disease-specific (Lupus Quality of Life (LupusQoL), Lupus Patient Reported Outcomes, Lupus Impact Tracker (LIT)) instruments. All measures had good convergent and discriminant validity. PROMIS provided the strongest evidence for known-group validity and reliability among generic instruments; however, data on its responsiveness have not been published. Across measures, standardised response means were generally indicative of poor-moderate sensitivity to longitudinal change. In RCTs, clinically important improvements were reported in SF36 scores from baseline; however, between-arm differences were frequently non-significant and non-important. SF36, PROMIS, LupusQoL and LIT had the strongest evidence for acceptable measurement properties, but few measures aside from the SF36 have been incorporated into clinical trials. This review highlights the importance of incorporating a broader range of SLE-specific HRQoL measures in RCTs and warrants further research that focuses on longitudinal responsiveness of newer instruments.

17.
Rehabil Psychol ; 63(3): 392-399, 2018 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-30047749

RESUMO

OBJECTIVES: Psychological distress among people with physical disabilities (PWPD) might affect their physical morbidity, reduce their quality and duration of life, and increase their need for health care services. Therefore, it is essential to explore the factors that might affect psychological distress among PWPD. The current study assesses the association between demographic factors (gender, education, and employment status), health- and disability-related factors (type of disability, visibility of the disability, disability duration, and self-rated health), and psychosocial factors (perceived discrimination and perceived social support), and psychological distress among PWPD in Israel. DESIGN: The data were collected through structured questionnaires administered to a sample of 433 PWPD. RESULTS: The findings suggest negative associations between education, employment status, duration of disability, self-rated health, and perceived social support, and psychological distress among PWPD. In addition, the findings indicate a positive association between perceived discrimination and psychological distress. No association was found between gender, type of disability, and visibility of the disability, and psychological distress. CONCLUSIONS AND IMPLICATIONS: PWPD who are unemployed, less educated, with a shorter duration of disability and lower self-rated health, as well as those who feel more discriminated against and less social support, are more likely to experience higher levels of psychological distress. Therefore, it is important to raise PWPD's awareness of their rights and of the social possibilities and services available to them, to provide them with mental help, to engage in extensive social activities aimed at providing resources to PWPD, and to act to eliminate discrimination. (PsycINFO Database Record


Assuntos
Pessoas com Deficiência/psicologia , Escolaridade , Emprego/estatística & dados numéricos , Inquéritos Epidemiológicos/estatística & dados numéricos , Estresse Psicológico/epidemiologia , Estresse Psicológico/psicologia , Adulto , Pessoas com Deficiência/estatística & dados numéricos , Emprego/psicologia , Feminino , Humanos , Israel , Masculino , Qualidade de Vida/psicologia , Fatores Sexuais , Apoio Social , Inquéritos e Questionários
18.
Stroke ; 49(8): 1933-1938, 2018 08.
Artigo em Inglês | MEDLINE | ID: mdl-29976582

RESUMO

Background and Purpose- The 2015 updated US Food and Drug Administration alteplase package insert altered several contraindications. We thus explored clinical factors influencing alteplase treatment decisions for patients with minor stroke. Methods- An expert panel selected 7 factors to build a series of survey vignettes: National Institutes of Health Stroke Scale (NIHSS), NIHSS area of primary deficit, baseline functional status, previous ischemic stroke, previous intracerebral hemorrhage, recent anticoagulation, and temporal pattern of symptoms in first hour of care. We used a fractional factorial design (150 vignettes) to provide unconfounded estimates of the effect of all 7 main factors, plus first-order interactions for NIHSS. Surveys were emailed to national organizations of neurologists, emergency physicians, and colleagues. Physicians were randomized to 1 of 10 sets of 15 vignettes, presented randomly. Physicians reported the subjective likelihood of giving alteplase on a 0 to 5 scale; scale categories were anchored to 6 probabilities from 0% to 100%. A conjoint statistical analysis was applied. Results- Responses from 194 US physicians yielded 156 with complete vignette data: 74% male, mean age 46, 80% neurologists. Treatment mean probabilities for individual vignettes ranged from 6% to 95%. Treatment probability increased from 24% for NIHSS score =1 to 41% for NIHSS score =5. The conjoint model accounted for 25% of total observed response variance. In contrast, a model accounting for all possible interactions accounted for 30% variance. Four of the 7 factors accounted jointly for 58% of total relative importance within the conjoint model: previous intracerebral hemorrhage (18%), recent anticoagulation (17%), NIHSS (13%), and previous ischemic stroke (10%). Conclusions- Four main variables jointly account for only a small fraction (<15%) of the total variance related to deciding to treat with intravenous alteplase, reflecting high variability and complexity. Future studies should consider other variables, including physician characteristics.


Assuntos
Tomada de Decisão Clínica , Médicos/tendências , Acidente Vascular Cerebral/tratamento farmacológico , Inquéritos e Questionários , Terapia Trombolítica/tendências , Ativador de Plasminogênio Tecidual/administração & dosagem , Administração Intravenosa , Tomada de Decisão Clínica/métodos , Feminino , Humanos , Masculino , Acidente Vascular Cerebral/diagnóstico por imagem , Resultado do Tratamento
19.
Am J Transplant ; 18(8): 1995-2004, 2018 08.
Artigo em Inglês | MEDLINE | ID: mdl-29667786

RESUMO

Frailty is associated with increased mortality among lung transplant candidates. We sought to determine the association between frailty, as measured by the Short Physical Performance Battery (SPPB), and mortality after lung transplantation. In a multicenter prospective cohort study of adults who underwent lung transplantation, preoperative frailty was assessed with the SPPB (n = 318) and, in a secondary analysis, the Fried Frailty Phenotype (FFP; n = 299). We tested the association between preoperative frailty and mortality following lung transplantation with propensity score-adjusted Cox models. We calculated postestimation marginalized standardized risks for 1-year mortality by frailty status using multivariate logistic regression. SPPB frailty was associated with an increased risk of both 1- and 4-year mortality (adjusted hazard ratio [aHR]: 7.5; 95% confidence interval [CI]: 1.6-36.0 and aHR 3.8; 95%CI: 1.8-8.0, respectively). Each 1-point worsening in SPPB was associated with a 20% increased risk of death (aHR: 1.20; 95%CI: 1.08-1.33). Frail subjects had an absolute increased risk of death within the first year after transplantation of 12.2% (95%CI: 3.1%-21%). In secondary analyses, FFP frailty was associated with increased risk of death within the first postoperative year (aHR: 3.8; 95%CI: 1.1-13.2) but not over longer follow-up. Preoperative frailty is associated with an increased risk of death after lung transplantation.


Assuntos
Fragilidade/mortalidade , Pneumopatias/mortalidade , Transplante de Pulmão/mortalidade , Complicações Pós-Operatórias , Qualidade de Vida , Índice de Gravidade de Doença , Idoso , Feminino , Seguimentos , Fragilidade/diagnóstico , Humanos , Pneumopatias/cirurgia , Masculino , Pessoa de Meia-Idade , Fenótipo , Prognóstico , Estudos Prospectivos , Fatores de Risco , Taxa de Sobrevida
20.
Arthritis Care Res (Hoboken) ; 70(7): 961-969, 2018 07.
Artigo em Inglês | MEDLINE | ID: mdl-29106028

RESUMO

OBJECTIVE: Osteoporotic fractures are associated with high morbidity and mortality. Persons with rheumatoid arthritis (RA) have twice the risk of osteoporosis-related fracture than age-matched controls, the causes for which remain unknown. We investigated contributions of RA characteristics, medication use, and body composition to low bone mineral density (BMD) in patients with RA. METHODS: Data were from the Arthritis, Body Composition, and Disability Study (n = 138; 82 women, 56 men). Demographic, clinical, laboratory, and functional variables were collected at study visits. Body composition (fat, lean muscle, and BMD) was measured by dual x-ray absorptiometry. Linear regression analyses evaluated the association between predictors and femoral neck BMD. RESULTS: Average disease duration was 19 years, 70% of patients were rheumatoid factor positive, and 55% were high-positive anti-cyclic citrullinated peptide (anti-CCP). Age and high anti-CCP positivity were negatively associated with BMD after controlling for other variables (ß = -0.003 and -0.055, respectively, P < 0.05). Appendicular lean mass index (ALMI) was positively associated with BMD (ß = 0.053, P < 0.0001). In high anti-CCP positivity participants, increasing anti-CCP levels were associated with a negative linear trend in BMD (ß = -0.011, P = 0.026). CONCLUSION: High anti-CCP positivity and ALMI were strongly associated with BMD in patients with RA. The linear relationship of anti-CCP levels with lower BMD supports the hypothesis that processes specific to RA negatively impact BMD. In contrast, ALMI was positively associated with BMD, emphasizing the importance of this potentially modifiable risk factor. Our findings highlight the complicated interplay of RA disease-specific and functional factors and their impact on bone mass.


Assuntos
Anticorpos Anti-Proteína Citrulinada/sangue , Artrite Reumatoide/sangue , Índice de Massa Corporal , Densidade Óssea/fisiologia , Magreza/sangue , Idoso , Artrite Reumatoide/diagnóstico , Artrite Reumatoide/epidemiologia , Biomarcadores/sangue , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Fatores de Risco , Magreza/diagnóstico , Magreza/epidemiologia
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