Keys to Recruiting and Retaining Seriously Ill African Americans With Sickle Cell Disease in Longitudinal Studies: Respectful Engagement and Persistence.

OBJECTIVES: Sickle cell disease (SCD) is a serious illness with disabling acute and chronic pain that needs better therapies, but insufficient patient participation in research is a major impediment to advancing SCD pain management. The purpose of this article is to discuss the challenges of conducting an SCD study and approaches to successfully overcoming those challenges. DESIGN: In a repeated-measures, longitudinal study designed to characterize SCD pain phenotypes, we recruited 311 adults of African ancestry. Adults with SCD completed 4 study visits 6 months apart, and age- and gender-matched healthy controls completed 1 visit. RESULTS: We recruited and completed measures on 186 patients with SCD and 125 healthy controls. We retained 151 patients with SCD with data at 4 time points over 18 months and 125 healthy controls (1 time point) but encountered many challenges in recruitment and study visit completion. Enrollment delays often arose from patients' difficulty in taking time from their complicated lives and frequent pain episodes. Once scheduled, participants with SCD cancelled 49% of visits often because of pain; controls canceled 30% of their scheduled visits. To facilitate recruitment and retention, we implemented a number of strategies that were invaluable in our success. CONCLUSION: Patients' struggles with illness, chronic pain, and their life situations resulted in many challenges to recruitment and completion of study visits. Important to overcoming challenges was gaining the trust of patients with SCD and a participant-centered approach. Early identification of potential problems allowed strategies to be instituted proactively, leading to success.

A Stepped-Wedge Randomized Controlled Trial: Effects of eHealth Interventions for Pain Control Among Adults With Cancer in Hospice.

CONTEXT: Unrelieved cancer pain at the end of life interferes with achieving patient-centered goals. OBJECTIVE: To compare effects of usual hospice care and PAINRelieveIt® on pain outcomes in patients and their lay caregivers. METHODS: In a five-step, stepped-wedge randomized, controlled study, 234 patients (49% male, 18% Hispanic, 51% racial minorities) and 231 lay caregivers (26% male, 20% Hispanic, 54% racial minorities) completed pre-pain/post-pain measures. They received usual hospice care with intervention components that included a summary of the patient's pain data, decision support for hospice nurses, and multimedia education tailored to the patient's and lay caregiver's misconceptions about pain. RESULTS: The intervention effect on analgesic adherence (primary outcome) was not significant. Post-test worst pain intensity was significantly higher for the experimental group, but the difference (0.70; CI = [0.12, 1.27]) was not clinically meaningful. There was nearly universal availability of prescriptions for strong opioids and adjuvant analgesics for neuropathic pain in both groups. Lay caregivers' pain misconceptions (0-5 scale) were significantly lower in the experimental group than the usual care group (mean difference controlling for baseline is 0.38; CI = [0.08, 0.67]; P = 0.01). CONCLUSION: This randomized controlled trial was a negative trial for the primary study outcomes but positive for a secondary outcome. The trial is important for clearly demonstrating the feasibility of implementing the innovative set of interventions.

Sensitivities to Thermal and Mechanical Stimuli: Adults With Sickle Cell Disease Compared to Healthy, Pain-Free African American Controls.

Evidence supports, but is inconclusive that sensitization contributes to chronic pain in some adults with sickle cell disease (SCD). We determined the prevalence of pain sensitization among adults with SCD pain compared with pain-free healthy adults. In a cross sectional, single session study of 186 African American outpatients with SCD pain (age 18-74 years, 59% female) and 124 healthy age, gender, and race matched control subjects (age 18-69 years, 49% female), we compared responses to standard thermal (Medoc TSA II) and mechanical stimuli (von Frey filaments). Although we observed no significant differences in thermal thresholds between controls and patients, patients with SCD had lower pain thresholds to mechanical stimuli and reported higher pain intensity scores to all thermal and mechanical stimuli at a non-painful body site. Compared with controls, about twice as many patients with SCD showed sensitization: 12% versus 23% at the anterior forearm site (P = .02), and 16% versus 32% across 3 tested sites (P = .004). Among patients with SCD, 18% exhibited some element of central sensitization. Findings indicate that persistent allodynia and hyperalgesia can be part of the SCD pain experience and should be considered when selecting therapies for SCD pain. PERSPECTIVE: Compared with matched healthy controls, quantitative sensory testing in adults with pain and sickle cell disease (SCD) demonstrates higher prevalence of sensitization, including central sensitization. The findings of allodynia and hyperalgesia may indicate neuropathic pain and could contribute to a paradigm shift in assessment and treatment of SCD pain.

Thermal and mechanical quantitative sensory testing values among healthy African American adults.

PURPOSE: Only a few studies have reported quantitative sensory testing (QST) reference values for healthy African Americans, and those studies are limited in sample size and age of participants. The study purpose was to characterize QST values in healthy, pain-free African American adults and older adults whose prior pain experiences and psychological status were also measured. We examined the QST values for differences by sex, age, and body test site. PATIENTS AND METHODS: A cross-sectional sample of 124 pain-free African American adults (age 18-69 years, 49% female) completed demographic and self-reported pain, fatigue and psychosocial measures. QST was performed to obtain thermal and mechanical responses and associated pain intensity levels. RESULTS: We found thermal detection values at the anterior forearm were (29.2 °C±1.6) for cool detection (CD) and (34.5 °C±1.2) for warm detection (WD). At that site the sample had cold pain threshold (CPTh) (26.3 °C±5.0), heat pain threshold (HPTh) (37.8 °C±3.6), and mechanical pain thresholds (MPTH) (16.7±22.2 grams of force, gF). There was a significant between sex difference for WD, with women being more sensitive (q=0.027). Lower body sites were less sensitive than upper body sites across all thermal modalities (q<0.003), but not for the mechanical modality. CONCLUSION: The QST values from this protocol at the anterior forearm indicate that the healthy African American adults had average thermal pain thresholds close to the temperature of adaptation and average MPTh under 20 gF. Differences in responses to thermal and mechanical stimuli for upper verses lower body were consistent with prior research.

Acupuncture to Improve Symptoms for Stable Angina: Protocol for a Randomized Controlled Trial.

BACKGROUND: Acupuncture has demonstrated physiologic analgesic effects in Chinese patients with stable angina. One proposed mechanism of action for these analgesic effects is the downregulation of M1 macrophages, interleukin 1 beta, interleukin-6, interleukin-18, and tumor necrosis factor alpha. OBJECTIVE: This study aims to test a 10-session, 5-week acupuncture treatment protocol as a complementary therapy for symptoms of stable angina for American patients, who vary from Chinese patients in health care systems and other salient variables. METHODS: We are conducting a randomized controlled trial (RCT) of 69 adults (35 assigned to initial acupuncture and 34 to an attention control condition) with a medically confirmed diagnosis of stable angina, whose pain and associated symptoms have not been controlled to their satisfaction with guideline-directed medical management. Participants in the experimental group will receive a standardized traditional Chinese medicine point prescription. The attention control group will view non-pain-related health education videos over 5 weeks equal to the 10 hours of treatment for the acupuncture group. Participants will complete the McGill Pain Questionnaire and the Seattle Angina Questionnaire-7, as well as have inflammatory cytokines measured at baseline and study completion. The primary outcomes are anginal pain and quality of life. RESULTS: This study has been funded over 2 years by the National Institutes of Health, National Institute for Nursing Research. We are currently recruiting and expect to have initial results by December 2020. CONCLUSIONS: We will generate data on feasibility, acceptability, effect sizes, and protocol revisions for a future fully powered RCT of the protocol. Findings will help determine if patients with persistent ischemic symptoms experience a proinflammatory state and hyperalgesia caused by multiple neural and immune processes not always relieved with medication. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/14705.

Factores relacionados con la adherencia a tratamientos de larga duración en adolescentes: Estudio descriptivo en un hospital terciario / Factors related to adherence to long-term treatment in adolescents. descriptive study in a tertiary hospital

Objetivo: Identificar los factores que pueden condicionar la adherencia a tratamientos de larga duración en adolescentes. Método: Estudio observacional, descriptivo y transversal realizado en el Campus Hospitalario Vall d'Hebron de Barcelona. Los participantes fueron adolescentes entre 12 y 18 años, con las siguientes condiciones: trasplantados de órganos sólidos, enfermedad oncohematológica, diabetes tipo 1, fibrosis quística o VIH+; así como sus cuidadores. Resultados: Participaron 153 adolescentes y 153 cuidadores. La media de edad de los adolescentes fue de 15 años (DE = 2) y el 54 % (83) eran varones. El 69 % (106) de los cuidadores eran mujeres. El 49 % (75) refirió saltarse el tratamiento alguna vez al mes o más frecuentemente; de ellos, el 92 % (69) conocía las consecuencias de no cumplirlo. Los diabéticos fueron el grupo que refirieron incumplimiento frecuente en menor porcentaje (25.6 %). Las causas principales de incumplimiento fueron el olvido (64 %), no disponer de la medicación (19 %) o cansarse de tomarla (11 %). El 39 % (59) de los cuidadores afirmaron que existían problemas de aceptación y cumplimiento por parte del adolescente. Se halló una mayor frecuencia de incumplimiento en pacientes con mayor número de fármacos y vías de administración. Las mujeres refirieron una mayor participación en las visitas de seguimiento. Conclusiones: Las variables asociadas a complejidad del tratamiento se relacionaron con incumplimiento frecuente. No hubo diferencias entre patologías en cuanto a las causas de incumplimiento referidas, hecho que podría facilitar el diseño de intervenciones transversales en cronicidad pediátrica. Las diferencias halladas entre sexos sugieren un estilo más participativo entre las adolescentes

Objetives: To identify the factors that can condition adherence to long-term treatment in adolescents. Method: An observational, descriptive and cross-sectional study carried out at the Vall d'Hebron Hospital Campus. Participants were adolescents between 12 and 18 years of age, with the following conditions: solid organ transplants, oncohematologic disease, type 1 diabetes, cystic fibrosis or HIV+ and their caregivers. Results: 153 adolescents and 153 caregivers participated. The mean age of adolescents was 15 years (SD = 2) and 54 % (83) were boys. 69 % (106) of the caregivers were women. 49 % (75) reported that they skipped treatment once a month or more frequently, of whom 92 % (69) knew the consequences of not doing so. Diabetics were the group that reported frequent noncompliance in a lower percentage (25.6 %). The main causes of noncompliance were forgetfulness (64 %), not having medication (19 %) or getting tired of taking it (11 %). 39 % (59) of the caregivers affirmed that there were problems of acceptance and compliance of the treatment by the adolescent. A higher frequency of noncompliance was found in patients with higher numbers of drugs and routes of administration. Women reported increased participation in follow-up visits. Conclusions: Variables associated with the complexity of treatment were related to frequent non-compliance. There were no differences between pathologies regarding the causes of noncompliance referred, which could facilitate the design of global interventions in pediatric chronicity. Differences found between sexes suggest a more participatory style and greater responsibility among women

Mitos, creencias y prácticas en cuidadores de niños con asma respecto al tratamiento con inhaladores en Chiclayo, Perú - 2013 / Myths, believes and practices in asthmatic children caregivers with respect to inhaler therapy in Chiclayo, Peru - 2013

Objetivos: Describir, analizar y explorar los mitos, creencias y prácticas de cuidadores de niños con asma en relación al tratamiento con inhaladores en la provincia de Chiclayo durante el año 2013. Material y métodos: Estudio cualitativo, de perspectiva explicativa, con base en la etnografía; se realizaron grupos focales y triangulación de la información; participaron 20 cuidadores de niños asmáticos, distribuidos en cuatro grupos focales y siete médicos pediatras; fueron captados mediante muestreo por conveniencia. Los resultados fueron grabados, transcritos, codificados y categorizados según análisis temático, en forma manual. Resultados: El 90% de los cuidadores fueron mujeres; en 55% sus hijos tuvieron asma mal controlada. Se identificaron algunos mitos: posibilidad de daño cardiaco, dependencia, alteraciones en el sistema nervioso, alteración del coeficiente intelectual e incremento de peso; además las siguientes creencias: alteraciones de la conducta, efectos en el crecimiento y en el sistema osteomuscular y una mayor efectividad de las nebulizaciones frente a los inhaladores. Se halló una técnica deficiente en el uso inhaladores y una elevada frecuencia de uso de plantas medicinales. Conclusiones: los cuidadores de niños asmáticos poseen mitos y creencias sobre los inhaladores, la mayoría ya reportados en realidades similares y diferentes a la nuestra. La técnica descrita del uso de inhaladores fue deficiente. Los médicos conocen la mayoría de los mitos, creencias y prácticas de sus pacientes. Es recomendable que el médico pregunte a los cuidadores sobre estos mitos y creencias para explicar, aclarar y brindar la ayuda necesaria, para mejorar adherencia y lograr un control mejor del problema

Objectives: To describe and analyze myths, beliefs, and practices of asthmatic children caregivers with respect to inhaler therapy in Chiclayo province during 2013. Material and methods: This is a qualitative study that used an explanatory perspective, and it was based on ethnography. Focus groups were implemented and data triangulation was performed. Twenty asthmatic children caregivers and seven pediatricians participated, which were divided in 4 focus groups. These persons were selected using a convenience sampling model. Results were recorded, transcribed, coded and manually categorized according to a thematic analysis. Results: Ninety per cent of caregivers were female; in 55% asthma in their children was poorly controlled. Some myths about the use of inhaled medications for asthma were identified: likelihood for cardiac adverse effects, dependence, alterations in the central nervous system, alterations in the intellectual quotient, and weight gain. Also, the following beliefs were found: behavioral disorders, side effects in growth and the musculoskeletal system, and greater effectiveness of nebulizations compared to that of inhalers. We also found a poor technique for inhaler use, and a high frequency of concomitant use of medicinal plants. Conclusions: Caregivers of asthmatic children have myths and beliefs about inhalers, similar to those reported in similar and different scenarios. The technique described for the use of inhalers was poor. Physicians know most myths, beliefs and practices of their patients. It is recommended that physicians actively ask caregivers about these myths and beliefs in order to explain, clarify and provide necessary assistance in order to improve adherence to therapy and achieve better asthma control

Implementing the PAIN RelieveIt Randomized Controlled Trial in Hospice Care: Mechanisms for Success and Meeting PCORI Methodology Standards.

This purpose of this article is to describe how we adhere to the Patient-Centered Outcomes Research Institute's (PCORI) methodology standards relevant to the design and implementation of our PCORI-funded study, the PAIN RelieveIt Trial. We present details of the PAIN RelieveIt Trial organized by the PCORI methodology standards and components that are relevant to our study. The PAIN RelieveIt Trial adheres to four PCORI standards and 21 subsumed components. The four standards include standards for formulating research questions, standards associated with patient centeredness, standards for data integrity and rigorous analyses, and standards for preventing and handling missing data. In the past 24 months, we screened 2,837 cancer patients and their caregivers; 874 dyads were eligible; 223.5 dyads consented and provided baseline data. Only 55 patients were lost to follow-up-a 25% attrition rate. The design and implementation of the PAIN RelieveIt Trial adhered to PCORI's methodology standards for research rigor.

Reproductive Health CHOICES for Young Adults with Sickle Cell Disease or Trait: Randomized Controlled Trial Outcomes over Two Years.

Interventions to assist reproductive health decision-making in populations affected by sickle cell disease (SCD) or trait (SCT) lack proven efficacy over time. Our aim was to compare effects of CHOICES, a Web-based multimedia education program on implementing informed reproductive plans, and usual care education (e-Book) on reproductive knowledge, intention, and behavior over 24 months. We randomized 234 participants with SCD (n = 138) or SCT (n = 96) (age 18-35 years, 35 % male, 94 % African American) to CHOICES and e-Book groups. Participants completed a sickle cell-specific reproductive measure before and four times after the intervention (6, 12, 18 and 24 months). Compared to the e-Book group the CHOICES group had significantly more improvement in knowledge over time (p = .004) but not intention (p = .18) or behavior (p = .69). At baseline, 114 (48.7 %) participants reported having partners who would not put the couple at risk for their children inheriting SCD. Of the 116 (49.6 %) at-risk participants, a higher poroportion of those who were in the CHOICES group chose partners that reduced their risk by the last visit than the e-Book group (p = .04). Study findings provide important insights for designing a national trial of the CHOICES intervention focusing on subjects whose partner status puts them at risk for having a child with SCD.

Opinión de los profesionales sanitarios sobre la adherencia y manejo de tratamientos de larga duración en adolescentes / Opinion of health professionals on adherence and management of long-term treatments in adolescents

Objetivo. Conocer la opinión de los profesionales sanitarios sobre la adherencia y el manejo de tratamientos de larga duración en adolescentes en un hospital de tercer nivel. Método. Estudio observacional, descriptivo y transversal, realizado en el Hospital Universitari Vall d'Hebron de Barcelona, España. Los sujetos de estudio fueron los profesionales sanitarios que atienden a los adolescentes trasplantados de órganos sólidos, seropositivos, con enfermedad oncohematológica, diabetes o fibrosis quística. La recogida de datos se realizó mediante cuestionario autocumplimentado, elaborado específicamente para este estudio. Resultados. Participaron 105 profesionales (70 %). Un 80 % eran enfermeras. El 56 % consideró que el cumplimiento del tratamiento de los adolescentes era bueno. Un 43 % señaló que la adherencia no se abordaba bien. El 79 % de los profesionales no disponían de tiempo planificado para realizar educación sanitaria relacionada con el tratamiento. El 19.5 % de las enfermeras y el 72,2 % de los médicos indicaron disponer de instrumentos de evaluación de la adherencia. El 39 % de los participantes realizó propuestas de mejora. Conclusiones. Casi la mitad de los profesionales opina que la adherencia terapéutica no se aborda adecuadamente. Es importante la evaluación de la adherencia a los tratamientos para identificar causas de bajo cumplimiento e instaurar y evaluar intervenciones adecuadas (AU)

Objective. To assess opinion of health professionals about adherence and management of long-term treatments in adolescents in a tertiary hospital. Method. A cross-sectional study was carried out in the Vall d'Hebron University Hospital in Barcelona, Spain. Participants were health professionals who care adolescents with solid organ transplant, hematologic disease, diabetes, cystic fibrosis or HIV+. Data collection was performed by self-administered questionnaire, developed specifically for this study. Results. A total of 105 professionals (70 %) participated in the study, 80 % were nurses, 56 % of them indicated that treatment compliance was good. 43 % indicated that adherence was not addressed well and 79 % of professionals did not have planned time to conduct health education related to treatment. 19.5 % of nurses and 72.2 % of physicians reported having adherence assessment tools. 39 % of participants made ??suggestions for improvement. Conclusions. Almost half of the professional indicate that the adherence is not adequately addressed. It is important to evaluate adherence to treatment to identify causes of low compliance and establish and evaluate appropriate interventions (AU)

Outpatient pain predicts subsequent one-year acute health care utilization among adults with sickle cell disease.

CONTEXT: Patient demographic and clinical factors have known associations with acute health care utilization (AHCU) among patients with sickle cell disease (SCD), but it is unknown if pain measured predominantly in an outpatient setting is a predictor of future AHCU in patients with SCD. OBJECTIVES: To determine whether multidimensional pain scores obtained predominantly in an outpatient setting predicted subsequent 1-year AHCU by 137 adults with SCD and whether the pain measured at a second visit also predicted AHCU. METHODS: Pain data included the Composite Pain Index (CPI), a single score representative of a multidimensional pain experience (number of pain sites, intensity, quality, and pattern). Based on the distribution of AHCU events, we divided patients into three groups: 1) zero events (zero), 2) 1 to 3 events (low), or 3) 4 to 23 events (high). RESULTS: The initial CPI scores differed significantly by the three groups (F(2,134) = 7.38, P = 0.001). Post hoc comparisons showed that the zero group had lower CPI scores than both the low (P < 0.01) and high (P < 0.001) groups. In multivariate overdispersed Poisson regression analyses, age and CPI scores (at both measurement times) were statistically significant predictors of utilization events. Pain intensity scores at both measurement times were significant predictors of utilization, but other pain scores (number of pain sites, quality, and pattern) were not. CONCLUSION: Findings support use of outpatient CPI scores or pain intensity and age to identify at-risk young adults with SCD who are likely to benefit from improved outpatient pain management plans.

Tecnología, acompañamiento psicológico y neuropsicología: tres vías para salir del síndrome de enclaustramiento / Technology, psychological support and neuropsychology: three ways out from Locked-in Syndrome

Los trastornos severos de la movilidad (TSM) se refieren a un conjunto amplio de patologías en las que se ve comprometida la capacidad de realizar movimientos voluntarios, involucrando no sólo la movilidad física, sino que también la comunicación y participación en la comunidad. Los avances médicos han mejorado notablemente las tasas de sobrevida de estas personas, planteando nuevos desafíos para su rehabilitación. Modelos actuales de rehabilitación en enfermedades neurológicas han destacado la importancia de intervenciones interdisciplinarias, donde no sólo se enfoque al tratamiento médico de la enfermedad, sino que también se promueva el bienestar psicosocial y la reinserción laboral. Desafortunadamente, estos modelos no se han transferido completamente a personas con TSM. En este trabajo se presenta una intervención tecnológica para favorecer la inclusión de una persona con Síndrome de Enclaustramiento producto de un traumatismo craneano. Con tal fin, se creó un sistema de comunicación aumentativa basado en un dispositivo lector de movimientos oculares. El diseño de dicho aparato fue ajustado de acuerdo a los rendimientos cognitivos del paciente. Este comunicador, permitió realizar una experiencia de acompañamiento psicológico orientada a apoyar la reinserción social y laboral de la persona. En un equipo interdisciplinario, y trabajando en conjunto con su red de trabajo, se facilitó el proceso de comunicación y re-inserción laboral a través de la estrategia de teletrabajo. Los resultados obtenidos en este caso apoyan la utilidad del uso integral de tecnología, acompañamiento psicológico y evaluación cognitiva, para promover la participación en personas con trastornos severos de movilidad...

Severe mobility disorders (SMD) refer to a broad set of difficulties, in which the ability to perform voluntary movements is compromised. Importantly, this impairment does not only have an impact on locomotion, but also generates drastic changes on social participation. Medical treatments have remarkably improved the survival rates of these patients, generating new challenges for rehabilitation teams. Current models in neuro-rehabilitation have highlighted the value of interdisciplinary interventions, particularly on those that promote psychosocial well-being and vocational rehabilitation. Nevertheless, these models have not been completely applied to people with SMD. This article describes the rehabilitation process of a patient with a Locked in Syndrome, which main goal was the use of technology to promote social inclusion and vocational rehabilitation. In order to achieve such goal, an augmentative communication system was created, based on an eye-tracker device. The design of the communicator was tailored to the particular cognitive abilities [and deficits] presented by the patient. This communicator enabled the rehabilitation team to psychologically support the patient during the process of social and vocational reinsertion. A telework-based strategy was used to enable the patient to resume productive life, as well as activating the patient’s social network. The experience obtained in this case supports the value of combining neuropsychological data, technology and psychological support in the rehabilitation process of people with SMD. Finally, general guidelines for clinical practices in rehabilitation with this population are suggested...

[OPINION OF HEALTH PROFESSIONALS ON ADHERENCE AND MANAGEMENT OF LONG-TERM TREATMENTS IN ADOLESCENTS]. / Opinión de los profesionales sanitarios sobre a adherencia y manejo de tratamientos de larga duración en adolescents.

OBJECTIVE: To assess opinion of health professionals about adherence and management of long-term treatments in adolescents in a tertiary hospital. METHOD: A cross-sectional study was carried out in the Vall d'Hebron University Hospital in Barcelona, Spain. Participants were health professionals who care adolescents with solid organ transplant, hematologic disease, diabetes, cystic fibrosis or HIV+. Data collection was performed by self-administered questionnaire, developed specifically for this study. RESULTS: A total of 105 professionals (70%) participated in the study, 80% were nurses, 56% of them indicated that treatment compliance was good. 43% indicated that adherence was not addressed well and 79% of professionals did not have planned time to conduct health education related to treatment. 19.5% of nurses and 72.2% of physicians reported having adherence assessment tools. 39% of participants made suggestions for improvement. CONCLUSIONS: Almost half of the professional indicate that the adherence is not adequately addressed. It is important to evaluate adherence to treatment to identify causes of low compliance and establish and evaluate appropriate interventions.

Reproductive health choices for young adults with sickle cell disease or trait: randomized controlled trial immediate posttest effects.

BACKGROUND: People with sickle cell disease (SCD) or sickle cell trait (SCT) may not have information about genetic inheritance needed for making informed reproductive health decisions. CHOICES is a Web-based, multimedia educational intervention that provides information about reproductive options and consequences to help those with SCD or SCT identify and implement an informed parenting plan. Efficacy of CHOICES compared with usual care must be evaluated. OBJECTIVE: The purpose was to compare immediate posttest effects of CHOICES versus an attention-control usual care intervention (e-Book) on SCD-/SCT-related reproductive health knowledge, intention, and behavior. METHODS: In a randomized controlled study, we recruited subjects with SCD/SCT from clinics, community settings, and online networks with data collected at sites convenient to the 234 subjects with SCD (n = 136) or SCT (n = 98). Their ages ranged from 18 to 35 years; 65% were women, and 94% were African American. Subjects completed a measure of sickle cell reproductive knowledge, intention, and behavior before and immediately after the intervention. RESULTS: Compared with the e-Book group, the CHOICES group had significantly higher average knowledge scores and probability of reporting a parenting plan to avoid SCD or SCD and SCT when pretest scores were controlled. Effects on intention and planned behavior were not significant. The CHOICES group showed significant change in their intention and planned behavior, whereas the e-Book group did not show significant change in their intention, but their planned behavior differed significantly. DISCUSSION: Initial efficacy findings are encouraging but warrant planned booster sessions and outcome follow-ups to determine sustained intervention efficacy on reproductive health knowledge, intention, and actual behavior of persons with SCD/SCT.

Biología molecular de los transportadores de glucosa: clasificación, estructura y distribución / Molecular biology of the transporters of glucose: classification, structures and distribution

Hexosas como la glucosa, galactosa y fructosa cumplen funciones importantes en las células eucarióticas. Estas moléculas son incapaces de difundir directamente a través de las membranas celulares por lo que requieren proteínas transportadoras especializadas para entrar al interior celular. Dichas biomoléculas pertenecen a un grupo de transportadores constituida por 2 familias de proteínas: la familia de los Glut´s (del inglés Glucose Transporters) y la familia de los co-transportadores de sodio y glucosa. Según la información obtenida de la secuencia de aminoácidos por medio de librerías de cADN todos poseen una estructura básica similar: 12 (Gluts) o 14 (SGLT) dominios trasmembrana. Igualmente todos parecen estar glicosilados en alguna de sus asas extracelulares. En los últimos siete años ha habido un explosivo incremento en la información sobre estos transportadores, de hecho, hasta hace diez años solo se conocían 6 transportadores pero esta familia ha crecido rápidamente hasta llegar a 14 miembros para los Gluts y 6 miembros para los SGLT´s. El impacto de estos descubrimientos se hace notar cuando se analizan los procesos en los que se involucran estas proteínas: Control de la glicemia basal y post-prandial; mecanismos de absorción de la glucosa y fructosa en el intestino delgado; absorción de fructosa en los espermatozoides; reabsorción de glucosa a nivel tubular renal y yeyuno; maduración de la expresión de Glut´s en la mama en lactación; incorporación de glucosa al músculo durante el ejercicio; mecanismo sensor en la secreción de insulina y respuestas adaptativa del metabolismo energético durante estados de estrés, etc.

Utilization of pay-in antenatal leave among working women in Southern California.

OBJECTIVES: Examine antenatal leave arrangements among pregnant workers in California, and the occupational, demographic and well-being characteristics associated with leave taking. Unlike most states, California provides paid pregnancy leave up to 4 weeks antenatally and 6-8 weeks postnatally. METHODS: Weighted data from postpartum telephone interviews conducted between July 2002 and November 2003 were analyzed for 1214 women participating in a case-control study of birth outcomes in Southern California. Eligible women worked at least 20 h/week during the first two trimesters of pregnancy or through the date of prenatal screening. The overall response rate was 73%. RESULTS: Fifty-two percent of women took no leave, 32% took antenatal leave expecting to return to their job or employer sometime after giving birth, and 9% quit their jobs during pregnancy. For leave-takers with paid leave (69%), the state was the main source of pay (74%). Medical problems (52%) rather than maternity leave benefits (25%) were the most common stated reasons for taking leave. The strongest predictors of leave taking versus working through pregnancy were feeling stressed and tired (adjusted OR = 4.3, 95% CI [2.2-8.2]) and having young children (adjusted OR = 2.1, 95% CI [1.2-3.7]), followed by occupational factors (night shift, unfulfilling and inflexible work, short work tenure). Lack of employer-offered maternity leave benefits was associated with increased quitting relative to both leave taking and working through pregnancy. CONCLUSIONS: Maternity benefits influence quitting, but alone do not determine antenatal leave taking. Working pregnant women in California utilize leave cautiously and predominantly to cope with health problems, work dissatisfaction and fatigue.

The effects of child-only insurance coverage and family coverage on health care access and use: recent findings among low-income children in California.

OBJECTIVE: To compare the extent with which child-only and family coverage (child and parent insured) ensure health care access and use for low income children in California and discuss the policy implications of extending the State Children's Health Insurance Program (California's Healthy Families) to uninsured parents of child enrollees. DATA SOURCES/SETTING: We used secondary data from the 2001 California Health Interview Survey (CHIS), a representative telephone survey. STUDY DESIGN: We conducted a cross-sectional study of 5,521 public health insurance-eligible children and adolescents and their parents to examine the effects of insurance (family coverage, child-only coverage, and no coverage) on measures of health care access and utilization including emergency room visits and hospitalizations. DATA COLLECTION: We linked the CHIS adult, child, and adolescent datasets, including the adolescent insurance supplement. FINDINGS: Among the sampled children, 13 percent were uninsured as were 22 percent of their parents. Children without insurance coverage were more likely than children with child-only coverage to lack a usual source of care and to have decreased use of health care. Children with child-only coverage fared worse than those with family coverage on almost every access indicator, but service utilization was comparable. CONCLUSIONS: While extending public benefits to parents of children eligible for Healthy Families may not improve child health care utilization beyond the gains that would be obtained by exclusively insuring the children, family coverage would likely improve access to a regular source of care and private sector providers, and reduce perceived discrimination and breaks in coverage. These advantages should be considered by states that are weighing the benefits of expanding health insurance to parents.

Overcoming the odds: access to care for immigrant children in working poor families in California.

OBJECTIVES: To explore the extent to which, among working poor families, uninsured immigrant children experience more barriers to care than uninsured nonimmigrants, and compare these differences to those of insured children. METHODS: We used data from the 2001 California Health Interview Survey, a randomized, population-based telephone survey conducted from November 2000 through September 2001. Financial and nonfinancial access to health care and utilization of health services were examined for 3,978 nonimmigrant and 462 immigrant children and adolescents under the age of 18 years. We compared differences in crude rates across four subgroups (insured immigrants, uninsured immigrants, insured nonimmigrants, uninsured nonimmigrants) and in adjusted models controlling for socioeconomic and immigration characteristics, parental language, health status, and other demographic factors. RESULTS: More immigrant than nonimmigrant children lacked health insurance at the time of the interview (44% vs. 17%, p < 0.0001). Among the uninsured, immigrants had higher odds of perceiving discrimination (11% vs. 5%, p < 0.05) and postponing emergency room (ER) (16% vs. 7%, p < 0.05) and dental care (40% vs. 30%, p < 0.05) after controlling for covariates. Among the insured, immigrants fared worse on almost every access and utilization outcome. Among insured immigrants, child and parent undocumented status and having a non-English-speaking parent contributed to missed physician and ER visits. CONCLUSIONS: Disparities in access and use remain for immigrant poor children despite public insurance eligibility expansions. Insurance does not guarantee equitable health care access and use for undocumented children. Financial and nonfinancial barriers to health care for immigrant children must be removed if we are to address disparities among minority children.

Access to health care for children and adolescents in working poor families: recent findings from California.

BACKGROUND: Children in working poor families are among the most disadvantaged, yet little is known about barriers to care for these children. OBJECTIVES: We sought to compare health care access and use by children from working poor families with other poor and nonpoor children and consider the extent to which expansions in public health insurance have contributed to increased access in California. METHODS: This was cross-sectional study using data from the 2001 California Health Interview Survey, a representative telephone survey. Using this survey, we were able to include 16,528 children younger than the age of 18 in our analysis. We measured financial and nonfinancial access to health care and service use. RESULTS: Children in working poor families had higher odds of being uninsured (adjusted odds ratio 2.9, 95% confidence interval 2.0, 4.1; adjusted odds ratio 3.7, 95% confidence interval 2.9, 4.8, respectively) compared with children in nonworking poor/TANF and nonpoor families. Disparities in nonfinancial access and use between the working poor and nonworking poor narrowed considerably when controlling for insurance and other covariates. Compared with nonpoor children, disparities in access were wider. The largest disparities in use were in dental care. After controlling for insurance and other covariates, disparities remained. CONCLUSIONS: Despite public insurance expansions, particularly through Healthy Families, disparities in insurance coverage between the working poor and other poor and nonpoor children remain, placing children of the working poor at a disadvantage for access and use. Insurance coverage expansions must be protected and coupled with continued efforts to narrow nonfinancial barriers to care.

Quimioprevención del cáncer de mama: fronteras y horizontes / Chemoprevention of the breast cancer: opposite and horizons

La modulación de la estimulación estrogénica en el tejido mamario constituyó por mucho tiempo la única estrategia terapéutica en la quimioprevención del cáncer de mama, siendo los moduladores selectivos de los receptores de estrógenos o SERMS los fármacos que han recibido más atención en este campo. Sin embargo, el aumento del conocimiento de blancos moleculares y de las vías intracelulares relacionadas con el proceso carcinogénico ha dado paso a la posibilidad de la utilización con fines quimiopreventivos de una gran cantidad de compuestos activos, que bien, forman parte de la dieta o se incluyen en el grupo de los fitoquímicos como los carotenoides, los fitoestrógenos y ciertas vitaminas. Igualmente, los receptores nucleares de la familia PPAR se han implicado como posibles agentes anticancerígenos, razón por la cual su modulación por fármacos como las tiazolidinedionas constituye una de las estrategias más recientes y prometedoras en el campo de la quimioprevención