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1.
Ann Intern Med ; 174(9): 1207-1213, 2021 09.
Artículo en Inglés | MEDLINE | ID: mdl-34224261

RESUMEN

BACKGROUND: Patients with sickle cell disease (SCD) have vaso-occlusive crises (VOCs). Infusion centers (ICs) are alternatives to emergency department (ED) care and may improve patient outcomes. OBJECTIVE: To assess whether care in ICs or EDs leads to better outcomes for the treatment of uncomplicated VOCs. DESIGN: Prospective cohort. (ClinicalTrials.gov: NCT02411396). SETTING: 4 U.S. sites, with recruitment between April 2015 and December 2016. PARTICIPANTS: Adults with SCD living within 60 miles of a study site. MEASUREMENTS: Participants were followed for 18 months after enrollment. Outcomes of interest were time to first dose of parenteral pain medication, whether pain reassessment was completed within 30 minutes after the first dose, and patient disposition on discharge from the acute care visit. Treatment effects for ICs versus EDs were estimated using a time-varying propensity score adjustment. RESULTS: Researchers enrolled 483 participants; the 269 who had acute care visits on weekdays are included in this report. With inverse probability of treatment-weighted adjustment, the mean time to first dose was 62 minutes in ICs and 132 minutes in EDs; the difference was 70 minutes (95% CI, 54 to 98 minutes; E-value, 2.8). The probability of pain reassessment within 30 minutes of the first dose of parenteral pain medication was 3.8 times greater (CI, 2.63 to 5.64 times greater; E-value, 4.7) in the IC than the ED. The probability that a participant's visit would end in admission to the hospital was smaller by a factor of 4 (0.25 [CI, 0.18 to 0.33]) with treatment in an IC versus an ED. LIMITATION: The study was restricted to participants with uncomplicated VOCs. CONCLUSION: In adults with SCD having a VOC, treatment in an IC is associated with substantially better outcomes than treatment in an ED. PRIMARY FUNDING SOURCE: Patient-Centered Outcomes Research Institute.


Asunto(s)
Dolor Agudo/tratamiento farmacológico , Dolor Agudo/etiología , Instituciones de Atención Ambulatoria , Analgésicos/administración & dosificación , Anemia de Células Falciformes/complicaciones , Servicio de Urgencia en Hospital , Manejo del Dolor/métodos , Femenino , Humanos , Infusiones Intravenosas , Masculino , Factores de Tiempo , Estados Unidos
2.
Blood Cells Mol Dis ; 74: 25-29, 2019 02.
Artículo en Inglés | MEDLINE | ID: mdl-30391047

RESUMEN

Metabolic syndrome (MetS) is a key risk factor for cardiovascular disease (CVD) incidence and all-cause mortality. MetS prevalence among adults with sickle cell disease (SCD) is not well known. We report initial findings from a cross-sectional study that examined MetS risk factors within a cohort of adults living with SCD. 50 adult SCD participants (ages 21-66 years; 72% female) completed demographic and health behavior surveys, health-related family and personal histories, and anthropometric and laboratory measurements. Descriptive and inferential statistics were used to summarize and compare CVD risk factors, stratified in separate analyses by SCD genotype and sex. Triglyceride, blood pressure, and fasting glucose levels were within normal limits. 78% of the cohort reported moderate to high physical activity. However, 46% of this cohort was overweight and dietary saturated fat intake exceeded both the national average (11%) and US Dietary Guidelines (<10%). 14.3% of the cohort fulfilled criteria for MetS with large waist circumference and reduced HDL levels prominently accounting for this status. We evaluated the prevalence of MetS in a cohort of adults living with SCD. Our findings suggest that increased attention to eating habits and physical activity may generate new approaches for decreasing cardiovascular morbidity in SCD.


Asunto(s)
Anemia de Células Falciformes/complicaciones , Síndrome Metabólico/fisiopatología , Adulto , Anciano , Estudios Transversales , Grasas de la Dieta , Humanos , Lipoproteínas HDL/sangre , Persona de Mediana Edad , Sobrepeso , Factores de Riesgo , Circunferencia de la Cintura , Adulto Joven
3.
J Gen Intern Med ; 34(1): 164, 2019 Jan.
Artículo en Inglés | MEDLINE | ID: mdl-30338470

RESUMEN

In the HTML version of this paper, Ms. Goddu was incorrectly listed. The correct citation should be AP Goddu. Exposure to the stigmatizing language note was associated with more negative attitudes towards the patient (20.3 stigmatizing vs. 25.1 neutral, p < 0.001). Reading the stigmatizing language note was associated with less aggressive management of the patient's pain (4.7 stigmatizing vs. 5.3 neutral, p < 0.001).

4.
Ann Intern Med ; 169(9): 619-627, 2018 11 06.
Artículo en Inglés | MEDLINE | ID: mdl-30383109

RESUMEN

Background: Although sickle cell trait (SCT) is largely a benign carrier state, it may increase risk for certain clinical outcomes. Purpose: To evaluate associations between SCT and clinical outcomes in children and adults. Data Sources: English-language searches of PubMed, CINAHL, the Cochrane Library, Current Contents Connect, Scopus, and Embase (1 January 1970 to 30 June 2018) and bibliographies of review articles. Study Selection: Observational controlled studies (published in English) in children or adults that examined an association between SCT and any of 24 clinical outcomes specified a priori in the following 6 categories: exertion-related injury; renal, vascular, pediatric, and surgery- or trauma-related outcomes; and overall mortality. Data Extraction: A single reviewer extracted study data, which was checked by another; 2 reviewers independently assessed study quality; and strength of evidence was assessed by consensus. Data Synthesis: Of 7083 screened studies, 41 met inclusion criteria. High-strength evidence supported a positive association between SCT and risk for pulmonary embolism, proteinuria, and chronic kidney disease. Moderate-strength evidence supported a positive association between SCT and exertional rhabdomyolysis and a null association between SCT and deep venous thrombosis, heart failure or cardiomyopathy, stroke, and pediatric height or weight. Absolute risks for thromboembolism and rhabdomyolysis were small. For the remaining 15 clinical outcomes, data were insufficient or strength of evidence was low. Limitation: Publication bias was possible, and high-quality evidence was scant. Conclusion: Sickle cell trait is a risk factor for a few adverse health outcomes, such as pulmonary embolism, kidney disease, and exertional rhabdomyolysis, but does not seem to be associated with such complications as heart failure and stroke. Insufficient data or low-strength evidence exists for most speculated complications of SCT. Primary Funding Source: National Human Genome Research Institute.


Asunto(s)
Rasgo Drepanocítico/complicaciones , Adulto , Estatura , Peso Corporal , Enfermedades Cardiovasculares/complicaciones , Niño , Humanos , Complicaciones Posoperatorias , Proteinuria/complicaciones , Insuficiencia Renal Crónica/complicaciones , Rabdomiólisis/complicaciones , Factores de Riesgo , Heridas y Lesiones/complicaciones
5.
J Gen Intern Med ; 33(5): 685-691, 2018 05.
Artículo en Inglés | MEDLINE | ID: mdl-29374357

RESUMEN

BACKGROUND: Clinician bias contributes to healthcare disparities, and the language used to describe a patient may reflect that bias. Although medical records are an integral method of communicating about patients, no studies have evaluated patient records as a means of transmitting bias from one clinician to another. OBJECTIVE: To assess whether stigmatizing language written in a patient medical record is associated with a subsequent physician-in-training's attitudes towards the patient and clinical decision-making. DESIGN: Randomized vignette study of two chart notes employing stigmatizing versus neutral language to describe the same hypothetical patient, a 28-year-old man with sickle cell disease. PARTICIPANTS: A total of 413 physicians-in-training: medical students and residents in internal and emergency medicine programs at an urban academic medical center (54% response rate). MAIN MEASURES: Attitudes towards the hypothetical patient using the previously validated Positive Attitudes towards Sickle Cell Patients Scale (range 7-35) and pain management decisions (residents only) using two multiple-choice questions (composite range 2-7 representing intensity of pain treatment). KEY RESULTS: Exposure to the stigmatizing language note was associated with more negative attitudes towards the patient (20.6 stigmatizing vs. 25.6 neutral, p < 0.001). Furthermore, reading the stigmatizing language note was associated with less aggressive management of the patient's pain (5.56 stigmatizing vs. 6.22 neutral, p = 0.003). CONCLUSIONS: Stigmatizing language used in medical records to describe patients can influence subsequent physicians-in-training in terms of their attitudes towards the patient and their medication prescribing behavior. This is an important and overlooked pathway by which bias can be propagated from one clinician to another. Attention to the language used in medical records may help to promote patient-centered care and to reduce healthcare disparities for stigmatized populations.


Asunto(s)
Actitud del Personal de Salud , Registros Médicos/normas , Estereotipo , Femenino , Humanos , Internado y Residencia , Lenguaje , Masculino , Estudiantes de Medicina/psicología
6.
South Med J ; 109(9): 583-7, 2016 09.
Artículo en Inglés | MEDLINE | ID: mdl-27598369

RESUMEN

OBJECTIVES: Sickle cell disease (SCD) is associated with a high level of emergency department and hospital utilization, as well as a high rate of hospital readmissions. At Johns Hopkins Hospital, as at other institutions, SCD accounts for a large proportion of readmissions. Our study examined patient and hospitalization factors involved in readmissions at Johns Hopkins Hospital. METHODS: Patients at the Johns Hopkins Sickle Cell Center for Adults with a readmission in fiscal year 2011 were compared with an age- and sex-matched sample of clinic patients for comorbidities, complications, and prior utilization. Hospitalizations that were followed by readmissions were compared with those that were not as to admitting service, length of stay, and average daily opioid dose. RESULTS: Patients with readmissions had more complications and comorbidities and much higher prior utilization than typical clinic patients, whereas hospitalizations that were followed by readmissions had a longer length of stay but similar opioid doses. CONCLUSIONS: For patients with SCD with a high volume of hospital use, readmissions may be a natural consequence of a high-admission frequency associated with greater disease severity and higher comorbidity.


Asunto(s)
Anemia de Células Falciformes/terapia , Hospitalización/estadística & datos numéricos , Readmisión del Paciente/estadística & datos numéricos , Adulto , Estudios de Casos y Controles , Femenino , Humanos , Tiempo de Internación/estadística & datos numéricos , Masculino , Factores de Riesgo
7.
South Med J ; 109(9): 560-5, 2016 09.
Artículo en Inglés | MEDLINE | ID: mdl-27598362

RESUMEN

OBJECTIVES: Neurocognitive dysfunction is an important complication of sickle cell disease (SCD), but little is published on the utility of screening tests for cognitive impairment in people with the disease. The purpose of this study was to evaluate the Montreal Cognitive Assessment (MoCA) as a screening tool and identify predictors of MoCA performance in adults with sickle cell disease. METHODS: We conducted a retrospective, cross-sectional study of the first 100 adult patients with SCD who completed the MoCA as part of routine clinical care at the Johns Hopkins Sickle Cell Center for Adults. We abstracted demographic, laboratory, and clinical data from each participant's electronic medical record up to the date that the MoCA was administered. The factorial validity of each MoCA domain was analyzed using standard psychometric statistics. We evaluated the abstracted data for associations with the composite MoCA score and looked for independent predictors of performance using multivariable regressions. RESULTS: Components of the MoCA performed well in psychometric analyses and identified deficits in executive function that were described in other studies. Forty-six percent of participants fell below the cutoff for mild cognitive impairment. Increased education was an independent predictor of increased MoCA score (3.1, 95% confidence interval [CI] 1.5-4.7), whereas cerebrovascular accidents and chronic kidney disease were independent predictors of decreased score (-3.3, 95% CI -5.7 to -0.97 and -3.2, 95% CI -6.2 to -0.11, respectively). When analysis was restricted to patients with SCA, increased education (3.7, 95% CI 2.2-5.2) and a history of hydroxyurea therapy (2.0, 95% CI -0.022 to 4.0) were independent predictors of a higher score, whereas chronic kidney disease (-3.3, 95% CI -6.4 to -0.24) and increased aspartate transaminase (-0.045, 95% CI -0.089 to -0.0010) were independent predictors of a decreased score. CONCLUSIONS: The MoCA showed promise by identifying important cognitive deficits and associations with chronic complications and therapy.


Asunto(s)
Anemia de Células Falciformes/complicaciones , Trastornos Neurocognitivos/etiología , Pruebas Neuropsicológicas , Adulto , Estudios Transversales , Función Ejecutiva , Femenino , Humanos , Masculino , Trastornos Neurocognitivos/diagnóstico , Estudios Retrospectivos , Factores de Riesgo
8.
South Med J ; 109(9): 519-24, 2016 09.
Artículo en Inglés | MEDLINE | ID: mdl-27598353

RESUMEN

OBJECTIVES: Sickle cell disease (SCD) is associated with high healthcare utilization rates and poor outcomes in a subset of patients, although the underlying factors that predict this phenotype are poorly understood. Prior studies suggest that comorbid avascular necrosis (AVN) contributes to high healthcare utilization. We sought to clarify whether AVN independently predicts acute care utilization in adults with SCD and to identify characteristics of those with AVN that predict higher utilization. METHODS: We reviewed the medical records of 87 patients with SCD with symptomatic AVN and compared acute care utilization and clinical characteristics with 87 sex- and age-matched patients with SCD without symptomatic AVN. Patients with ≥2 years of follow-up were included. Outcomes were compared using bivariate analysis and multivariate regression. RESULTS: Our study included 1381 follow-up years, with a median of 7 years per patient. The AVN cohort had greater median rates of urgent care visits (3.2/year vs 1.3/year; P = 0.0155), admissions (1.3/year vs 0.4/year; P = 0.0002), and admission days (5.1 days/year vs 1.8 days/year; P = 0.0007). History of high utilization (odds ratio [OR] 4.28; P = 0.001), acute chest syndrome (OR 3.12; P = 0.005), pneumonia (OR 3.20; P = 0.023), hydroxyurea therapy (OR 2.23; P = 0.0136), and long-term transfusion (OR 2.33; P = 0.014) were associated with AVN. In a median regression model, AVN, acute chest syndrome, and pneumonia were independently associated with greater urgent care visits and admissions. CONCLUSIONS: Symptomatic AVN was found to be an independent risk factor for acute care utilization in patients with SCD. Because this is a potentially modifiable factor, further studies are urgently needed to determine whether AVN prevention/early treatment interventions will alter utilization and improve outcomes for patients with SCD.


Asunto(s)
Anemia de Células Falciformes/complicaciones , Cuidados Críticos/estadística & datos numéricos , Osteonecrosis/etiología , Adulto , Anciano , Anemia de Células Falciformes/terapia , Estudios de Casos y Controles , Femenino , Humanos , Masculino , Persona de Mediana Edad , Osteonecrosis/terapia , Estudios Retrospectivos , Factores de Riesgo , Adulto Joven
9.
South Med J ; 109(9): 576-8, 2016 09.
Artículo en Inglés | MEDLINE | ID: mdl-27598367

RESUMEN

OBJECTIVES: Poor oral health can have a negative impact on overall health. This is especially concerning for individuals with sickle cell disease (SCD), an inherited blood disorder that affects hemoglobin and can lead to an increased risk of infection and hyperalgesia. Because the majority of individuals with SCD have Medicaid insurance and no dental coverage, we provided free basic dental care to individuals with SCD to determine whether it decreased overall healthcare utilization. METHODS: Through a contract with a private dental office, we provided free basic dental care (eg, cleanings, fillings, x-rays) to individuals with SCD. We reviewed medical records for the 12 months before and after their initial dental visit to determine whether there were any changes in acute care visits (defined as a visit to the emergency department, sickle cell infusion center, or visits to both in the same day), hospitalizations, and total days hospitalized. We conducted a negative binomial regression to determine any differences in the pre-post periods. RESULTS: In our multivariable analysis, there was a statistically significant decrease in hospital admissions. In addition, there was a significant decrease in total days hospitalized if dental work was completed, but an increase in days hospitalized in men. CONCLUSIONS: Providing dental care to individuals with SCD who did not have dental insurance did not greatly alter acute care visits. A larger sample size may be necessary to observe an effect.


Asunto(s)
Anemia de Células Falciformes/terapia , Atención Odontológica , Adulto , Anemia de Células Falciformes/complicaciones , Estudios Controlados Antes y Después , Atención a la Salud/estadística & datos numéricos , Atención Odontológica/economía , Atención Odontológica/organización & administración , Femenino , Hospitalización/estadística & datos numéricos , Humanos , Tiempo de Internación , Masculino , Persona de Mediana Edad , Enfermedades Estomatognáticas/prevención & control , Enfermedades Estomatognáticas/terapia , Adulto Joven
10.
Pain Manag Nurs ; 17(1): 38-46, 2016 Feb.
Artículo en Inglés | MEDLINE | ID: mdl-26673730

RESUMEN

No studies to date have systematically investigated insomnia symptoms among adults with sickle cell disease (SCD). The purpose of this study was to (1) describe the prevalence of insomnia symptoms and (2) identify biopsychosocial predictors in community-dwelling adults with SCD. Cross-sectional analysis of baseline data from 263 African American adults with SCD (aged 18 years or older). Measures included the Insomnia Severity Index (ISI), Center for Epidemiologic Studies in Depression scale, Urban Life Stress Scale, Brief Pain Inventory, and a chronic pain item. SCD genotype was extracted from the medical record. A slight majority (55%) of the sample reported clinically significant insomnia symptomatology (ISI ≥ 10), which suggests that insomnia symptoms are prevalent among community-dwelling African American adults with SCD. While insomnia symptoms were associated with a number of biopsychosocial characteristics, depressive symptoms and acute pain were the only independent predictors. Given the high number of participants reporting clinically significant insomnia symptoms, nurses should screen for insomnia symptoms and explore interventions to promote better sleep among adults with SCD, with an emphasis on recommending treatment for pain and depression. In addition, current pain and depression interventions in this population could add insomnia measures and assess the effect of the intervention on insomnia symptomatology as a secondary outcome.


Asunto(s)
Anemia de Células Falciformes/complicaciones , Dolor Crónico/etiología , Depresión/etiología , Trastornos del Inicio y del Mantenimiento del Sueño/etiología , Adulto , Negro o Afroamericano , Anciano , Anciano de 80 o más Años , Estudios Transversales , Femenino , Humanos , Masculino , Persona de Mediana Edad , Valor Predictivo de las Pruebas , Índice de Severidad de la Enfermedad
11.
Am J Hematol ; 90(5): 376-80, 2015 May.
Artículo en Inglés | MEDLINE | ID: mdl-25639822

RESUMEN

Most adults with sickle cell disease (SCD) receive care for their acute painful episodes in an emergency department (ED) setting. The purpose of this article is to describe the impact of opening a dedicated treatment center for adults with SCD [Sickle Cell Infusion Clinic (SCIC)] on patient outcomes and on hospital discharges for SCD. Descriptive data including demographics, time to first dose of narcotic, and pain scores were collected on patients presenting to the SCIC and ED. Maryland hospital discharge data were obtained from the Maryland Health Services Cost Review Commission. Analyses were conducted using T tests, χ(2) tests, and simple generalized estimating equation regression models accounting for the clustered nature of observations, as appropriate. There were 3,874 visits to the SCIC by 361 unique patients; 85% of those visits resulted in the patient being sent home. During the same time period, there were 3,408 visits to the ED by 558 unique patients with SCD. The overall admission rate from the ED for these patients was 35.9% but decreased significantly over the time period with a rate of 20% in December 2011. There was a significant decrease in readmissions over time for the entire Baltimore Metro area with the likelihood of readmission decreasing by 7% over time. The SCIC model provides adults with SCD access to high quality care that decreases the need for hospital admission. Further research needs to be done to evaluate the cost effectiveness of this model.


Asunto(s)
Instituciones de Atención Ambulatoria/organización & administración , Anemia de Células Falciformes/terapia , Servicio de Urgencia en Hospital/estadística & datos numéricos , Manejo del Dolor/estadística & datos numéricos , Dolor/fisiopatología , Adulto , Anemia de Células Falciformes/complicaciones , Anemia de Células Falciformes/economía , Anemia de Células Falciformes/fisiopatología , Manejo de la Enfermedad , Femenino , Humanos , Masculino , Dolor/complicaciones , Dolor/economía , Admisión del Paciente/estadística & datos numéricos , Alta del Paciente/estadística & datos numéricos , Factores de Tiempo
12.
J Natl Med Assoc ; 107(2): 89-96, 2015 Jun.
Artículo en Inglés | MEDLINE | ID: mdl-27269495

RESUMEN

BACKGROUND: A high level of evidence exists to suggest that negative attitudes held by clinicians toward persons with sickle cell disease serve as important barriers to the delivery of high quality care to this patient population. Little is known, though, about the characteristics of clinicians that may be predictive of these negative attitudes. METHODS: During spring and summer 2009, we conducted a randomized controlled trial to test an intervention to improve clinician attitudes toward persons with sickle cell disease. Participating clinicians completed questionnaires regarding their demographic characteristics and their attitudes toward sickle cell patients. Principal clinician characteristics of interest included their race, professional discipline (nurse/physician), and the amount of their recent exposure to sickle cell patients in pain. Secondary analyses from this trial are presented here. MAIN FINDINGS: Asian clinicians reported more negative attitudes towards these patients than did Black or White clinicians, nurses reported more negative attitudes than physicians, and clinicians with the greatest levels of recent exposure to sickle cell patients in pain reported more negative attitudes than did clinicians with lower levels of recent exposure. CONCLUSIONS: Our findings could facilitate the development of tailored educational resources needed to improve the quality of care delivered to persons with sickle cell disease, a national priority for sickle cell efforts.

13.
South Med J ; 108(9): 531-6, 2015 Sep.
Artículo en Inglés | MEDLINE | ID: mdl-26332477

RESUMEN

OBJECTIVE: The purpose of this study was to determine the comfort levels of primary care providers in caring for individuals with sickle cell disease (SCD) and determine factors that improved or lessened provider comfort. METHODS: We surveyed providers at the annual Johns Hopkins Community Physicians retreat. The survey consisted of 19 questions and measured comfort levels in four domains: providing ambulatory care to individuals with SCD, managing SCD comorbidities, managing SCD-specific issues, and managing chronic pain. We conducted bivariate analyses to identify any demographic or practice characteristics associated with comfort levels. Multivariable analyses were conducted to identify independent correlates of physician comfort. RESULTS: The majority of respondents lacked confidence with each of the four aspects of caring for individuals with SCD. Having treated patients with SCD and using knowledge from residency were both independently associated with increased confidence when providing ambulatory care and managing SCD-specific issues in multivariable analyses. CONCLUSIONS: The delivery of high-quality care to adults with SCD in primary care may be limited because of a lack of provider comfort in providing that care. Because provider reliance on knowledge gained from residency significantly affected the management of patients with SCD, it is essential that continuing medical education on SCD is readily available to ensure that providers are using current information and knowledge. In addition, as comfort increases with the number of patients with SCD in a provider's panel, it may be beneficial to identify a subset of primary care providers interested in SCD and refer patients to those providers.


Asunto(s)
Anemia de Células Falciformes/terapia , Actitud del Personal de Salud , Competencia Clínica , Conocimientos, Actitudes y Práctica en Salud , Médicos de Atención Primaria , Adulto , Atención Ambulatoria , Anemia de Células Falciformes/epidemiología , Comorbilidad , Femenino , Humanos , Masculino , Persona de Mediana Edad , Análisis Multivariante , Manejo del Dolor , Relaciones Médico-Paciente , Médicos de Atención Primaria/psicología
14.
J Gen Intern Med ; 29(12): 1657-62, 2014 Dec.
Artículo en Inglés | MEDLINE | ID: mdl-25205621

RESUMEN

BACKGROUND: Adults with sickle cell disease (SCD) report experiencing discriminatory behavior from some healthcare providers. The impact of discrimination on health outcomes in SCD, including adherence to physician recommendations, is not known. OBJECTIVE: Our aim was to evaluate the association between perceived discrimination from healthcare providers and nonadherence to physician recommendations among persons with SCD, and to test the potentially mediating role of patient trust. PARTICIPANTS: Patients with SCD (age 15 years and older) participating in the Improving Patient Outcomes with Respect and Trust (IMPORT) Study. MAIN MEASURES: Perceived discrimination from healthcare providers and reported adherence to physician recommendations were assessed by patient self-report using items from the 2001 Commonwealth Fund Health Survey. Interpersonal trust in medical professionals was assessed using the short form of the Wake Forest Trust in Medical Professionals instrument. DESIGN: We used a cross-sectional analysis of IMPORT participant data. Multivariable Poisson regression models were used to test the independent association of discrimination with adherence and to test patient trust as a potential mediator. KEY RESULTS: Among 273 SCD patients with complete data on all variables of interest, patients reporting experiences of discrimination in the healthcare system were 53% more likely to also report being nonadherent to physician recommendations. Trust in medical professionals appeared to mediate the discrimination/nonadherence relationship, accounting for 50% of the excess prevalence of nonadherence among those experiencing discrimination. CONCLUSION: SCD patient perceptions of discriminatory experiences from healthcare providers are associated with greater nonadherence to physician recommendations, and may be a potential factor contributing to disparities in health and health quality among this patient population. Perceived discrimination appears to affect adherence behaviors through the pathway of patient trust. Improving relationships between healthcare providers and SCD patients may improve the trust that SCD patients have in medical professionals, which in turn may improve other outcomes among this underserved patient population.


Asunto(s)
Anemia de Células Falciformes/psicología , Cooperación del Paciente/estadística & datos numéricos , Prejuicio , Confianza , Adolescente , Adulto , Anemia de Células Falciformes/terapia , Estudios Transversales , Femenino , Humanos , Masculino , Maryland , Persona de Mediana Edad , Relaciones Médico-Paciente , Autoinforme , Factores Socioeconómicos , Adulto Joven
15.
Clin Trials ; 11(3): 275-283, 2014 06.
Artículo en Inglés | MEDLINE | ID: mdl-24532686

RESUMEN

Background A substantial number of planned clinical trials for sickle cell disease (SCD) have terminated early due to insufficient patient enrollment. Purpose To describe attitudes toward clinical trials among a sample of adults with SCD and identify patient-level factors associated with these attitudes. Methods Our data came from a sample (N = 291) of primarily adults with SCD participating in the Improving Patient Outcomes with Respect and Trust (IMPORT) study, which is a federally funded observational study of SCD patient experiences in seeking healthcare. Attitudes toward clinical trials were assessed using items from the Perceptions of Participation in Clinical Research instrument. Patient factors examined as potential correlates of clinical trial attitudes were demographics, disease severity, engagement in self-care, trust, healthcare experience ratings, and prior history of participation in clinical trials. Multiple regression analyses were used to identify patient-level correlates of clinical trial attitudes. Results Our sample of SCD patients expressed overwhelmingly favorable attitudes about clinical trials, with 77%-92% of our sample expressing agreement with a series of positive statements about clinical trials in general. Demographics, engagement in self-care, healthcare experience ratings, and prior trial participation each explained significant portions of the variability in clinical trial attitudes. Limitations The generalizability of our results to the entire SCD population may be of concern as the study participants were all receiving care at comprehensive sickle cell centers and already participating in clinical research. Conclusion Our results suggest that, in principle, adults with SCD enrolled in an observational study express very positive general attitudes about clinical trial participation and that specific factors attached to particular clinical trial opportunities may play a greater role in a SCD patient's decision to participate than a general unwillingness to participate.


Asunto(s)
Anemia de Células Falciformes/terapia , Ensayos Clínicos como Asunto , Conocimientos, Actitudes y Práctica en Salud , Relaciones Médico-Paciente , Sujetos de Investigación/psicología , Adulto , Femenino , Humanos , Masculino , Persona de Mediana Edad
16.
J Natl Med Assoc ; 106(1): 23-30, 2014.
Artículo en Inglés | MEDLINE | ID: mdl-26744112

RESUMEN

Language matters. The words used to name and describe disease phenomena are a reflection of society. The authors address the use of the word "crisis" in SCD from sociological, historical, medical, and patient perspectives. The term "crisis" became associated with sickle cell disease in the mid-1920s, more than a decade after the first description of the disease had been published. The term had been used for centuries in conjunction with fever and as a signifier of severe pain in certain diseases during the nineteenth century. The application of the term to this new disease in the 1920s resulted from physicians' observations of their patients' urgent situations. Though commonly used by health care providers and patients today, "crisis" may not be the appropriate term for sickle cell patients suffering severe pain, because people endure differing amounts of pain before stating they are "in crisis." The result can be undertreatment of the pain or mistrust between physicians and patients about use of strong (narcotic) pain-relievers. Some patients believe the term is useful in communicating the severity of their pain and the urgency of their need for relief from it, especially when seeking care at hospital emergency departments, while others believe "crisis" does not accurately reflect the severity or seriousness of their situation.

17.
Clin Transplant ; 27(5): 673-83, 2013.
Artículo en Inglés | MEDLINE | ID: mdl-23902226

RESUMEN

BACKGROUND: Reasons for US racial-ethnic minority ESRD patients' reported difficulties identifying live kidney donors are poorly understood. METHODS: We conducted a national study to develop scales measuring willingness to donate live kidneys among US adults (scores ranged from 0 [not willing] to 10 [extremely willing]), and we tested whether racial-ethnic differences exist in willingness to donate. We also examined whether clinical, sociodemographic, and attitudinal factors mediated potential racial-ethnic differences in willingness. RESULTS: Among 845 participants, the majority were extremely willing to donate to relatives (77%) while fewer than half were extremely willing to donate to non-relatives (18%). In multivariable linear regression analyses, willingness to donate varied by race-ethnicity and recipient relationship to the donor. African Americans were less willing to donate to relatives than whites (ß: -0.48; 95% CI [Confidence Interval]: -0.94 to -0.17; p = 0.04), but these differences were eliminated after accounting for socioeconomic factors, medical trust, and concerns about burial after death. There were no differences in willingness to donate between Hispanics and whites. CONCLUSIONS: African Americans' burial concerns, medical trust, and socioeconomic factors explained differences in their willingness to donate to relatives, suggesting efforts to address these barriers may enhance rates of live kidney donation in this group.


Asunto(s)
Actitud Frente a la Salud , Negro o Afroamericano/psicología , Hispánicos o Latinos/psicología , Trasplante de Riñón/psicología , Donadores Vivos/psicología , Población Blanca/psicología , Adolescente , Adulto , Anciano , Estudios Transversales , Femenino , Conocimientos, Actitudes y Práctica en Salud , Humanos , Masculino , Persona de Mediana Edad , Pronóstico , Grupos Raciales , Factores Socioeconómicos , Encuestas y Cuestionarios , Estados Unidos , Adulto Joven
18.
AIDS Care ; 25(9): 1185-92, 2013.
Artículo en Inglés | MEDLINE | ID: mdl-23320529

RESUMEN

Persons with HIV who develop depression have worse medical adherence and outcomes. Poor patient-provider communication may play a role in these outcomes. This cross-sectional study evaluated the influence of patient depression on the quality of patient-provider communication. Patient-provider visits (n=406) at four HIV care sites were audio-recorded and coded with the Roter Interaction Analysis System (RIAS). Negative binomial and linear regressions using generalized estimating equations tested the association of depressive symptoms, as measured by the Center for Epidemiology Studies Depression scale (CES-D), with RIAS measures and postvisit patient-rated quality of care and provider-reported regard for his or her patient. The patients, averaged 45 years of age (range =20-77), were predominately male (n=286, 68.5%), of black race (n=250, 60%), and on antiretroviral medications (n=334, 80%). Women had greater mean CES-D depression scores (12.0) than men (10.6; p=0.03). There were no age, race, or education differences in depression scores. Visits with patients reporting severe depressive symptoms compared to those reporting none/mild depressive symptoms were longer and speech speed was slower. Patients with severe depressive symptoms did more emotional rapport building but less social rapport building, and their providers did more data gathering/counseling (ps<0.05). In postvisit questionnaires, providers reported lower levels of positive regard for, and rated more negatively patients reporting more depressive symptoms (p<0.01). In turn, patients reporting more depressive symptoms felt less respected and were less likely to report that their provider knows them as a person than none/mild depressive symptoms patients (ps<0.05). Greater psychosocial needs of patients presenting with depressive symptoms and limited time/resources to address these needs may partially contribute to providers' negative attitudes regarding their patients with depressive symptoms. These negative attitudes may ultimately serve to adversely impact patient-provider communication and quality of HIV care.


Asunto(s)
Depresión/psicología , Infecciones por VIH/psicología , Relaciones Médico-Paciente , Adulto , Actitud del Personal de Salud , Estudios Transversales , Femenino , Infecciones por VIH/terapia , Humanos , Masculino , Persona de Mediana Edad , Calidad de la Atención de Salud/estadística & datos numéricos , Encuestas y Cuestionarios
19.
Ann Emerg Med ; 62(4): 293-302.e10, 2013 Oct.
Artículo en Inglés | MEDLINE | ID: mdl-23561465

RESUMEN

STUDY OBJECTIVE: We determine whether emergency provider attitudes and demographics are associated with adherence to national guidelines for the management of acute sickle cell disease pain. METHODS: We conducted a cross-sectional survey of emergency providers at the 2011 annual American College of Emergency Physicians Scientific Assembly, using a validated instrument to assess provider attitudes and self-reported analgesic practices toward patients with sickle cell disease. Multivariable, relative risk regressions were used to identify factors associated with adherence to guidelines. RESULTS: There were 722 eligible participants, with a 93% complete response rate. Most providers self-reported adherence to the cornerstones of sickle cell disease pain management, including parenteral opioids (90%) and redosing opioids within 30 minutes if analgesia is inadequate (85%). Self-reported adherence was lower for other recommendations, including use of patient-controlled analgesia, acetaminophen, non-steroidal anti-inflammatory drugs and hypotonic fluids for euvolemic patients. Emergency providers in the highest quartile of negative attitudes were 20% less likely to redose opioids within 30 minutes for inadequate analgesia (risk ratio 0.8; 95% confidence interval [CI] 0.7 to 0.9). High-volume providers (those who treat more than 1 sickle cell disease patient per week), were less likely to redose opioids within 30 minutes for inadequate analgesia (risk ratio 0.9; 95% CI 0.8 to 0.9). Pediatric providers were 6.6 times more likely to use patient-controlled analgesia for analgesia (95% CI 2.6 to 16.6). CONCLUSION: The majority of emergency providers report that they adhere to national guidelines about use of opioids for sickle cell disease-related acute pain episodes. Other recommendations have less penetration. Negative attitudes toward individuals with sickle cell disease are associated with lower adherence to guidelines.


Asunto(s)
Analgésicos/uso terapéutico , Anemia de Células Falciformes/tratamiento farmacológico , Actitud del Personal de Salud , Medicina de Emergencia/estadística & datos numéricos , Manejo del Dolor/estadística & datos numéricos , Pautas de la Práctica en Medicina/estadística & datos numéricos , Dolor Agudo/tratamiento farmacológico , Adulto , Analgésicos Opioides/uso terapéutico , Anemia de Células Falciformes/complicaciones , Estudios Transversales , Medicina de Emergencia/normas , Femenino , Adhesión a Directriz/estadística & datos numéricos , Humanos , Masculino , Persona de Mediana Edad , Manejo del Dolor/psicología , Estados Unidos
20.
Am J Emerg Med ; 31(4): 651-6, 2013 Apr.
Artículo en Inglés | MEDLINE | ID: mdl-23380119

RESUMEN

STUDY OBJECTIVE: To determine whether patients with sickle cell disease (SCD) experience longer wait times to see a physician after arrival to an emergency department (ED) compared to patients with long bone fracture and patients presenting with all other possible conditions (General Patient Sample), and to attempt to disentangle the effects of race and disease status on any observed differences. METHODS: A cross-sectional, comparative analysis of year 2003 through 2008 data from the National Hospital Ambulatory Medical Care Survey, a nationally representative sample of nonfederal emergency department visits in the United States. Our primary outcome was wait time (in minutes) to see a physician after arrival to an ED. A generalized linear model was used to examine ratios of wait times comparing SCD visits to the two comparison groups. RESULTS: SCD patients experienced wait times 25% longer than the General Patient Sample, though this difference was explained by the African-American race of the SCD patients. SCD patients waited 50% longer than did patients with long bone fracture even after accounting for race and assigned triage priority. CONCLUSIONS: Patients with SCD presenting to an ED for care experience longer wait times than other groups, even after accounting for assigned triage level. The African-American race of the SCD patients, and their status as having SCD itself, both appear to contribute to longer wait times for these patients. These data confirm patient anecdotal reports and are in need of intervention.


Asunto(s)
Anemia de Células Falciformes/epidemiología , Negro o Afroamericano/estadística & datos numéricos , Servicio de Urgencia en Hospital/estadística & datos numéricos , Adulto , Anemia de Células Falciformes/terapia , Estudios Transversales , Femenino , Encuestas de Atención de la Salud , Humanos , Modelos Lineales , Masculino , Factores de Tiempo , Estados Unidos/epidemiología
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