An international survey of patients with thalassemia major and their views about sustaining life-long desferrioxamine use

BACKGROUND: Management of thalassemia major requires patients to have life-long access to a treatment regimen of regular blood transfusions coupled with iron chelation therapy. The objective of this study was to investigate patients' reasons for missing iron chelation therapy with desferrioxamine, and the support to sustain life-long adherence to treatment. METHODS: From October 1999 to May 2000 a survey of patients with thalassemia major was conducted in ten countries: Cyprus, Egypt, Greece, Hong Kong, India, Iran, Italy, Jordan, Taiwan, and the United States. RESULTS: 1,888 questionnaires (65%) were returned. Most patients (1,573) used desferrioxamine, and 79% administered a dose at least 4 days a week. Inaccessibility of the drug was a common reason for missing a dose in India (51%), and in Iran (25%), whereas, in any other country, it was a reason for less than 17% of patients. Overall, 58% reported reasons for missing a dose related to their beliefs or feelings about the medication, and 42% drug-related side effects. CONCLUSION: Many patients miss doses of desferrioxamine and an opportunity remains to develop interventions that provide more support to sustain use of desferrioxamine

Spiritual Well-Being and Depression in Patients with Heart Failure

BACKGROUND: In patients with chronic heart failure, depression is common and associated with poor quality of life, more frequent hospitalizations, and higher mortality. Spiritual well-being is an important, modifiable coping resource in patients with terminal cancer and is associated with less depression, but little is known about the role of spiritual well-being in patients with heart failure. OBJECTIVE: To identify the relationship between spiritual well-being and depression in patients with heart failure. DESIGN: Cross-sectional study. PARTICIPANTS: Sixty patients aged 60 years or older with New York Heart Association class II–IV heart failure. MEASUREMENTS: Spiritual well-being was measured using the total scale and 2 subscales (meaning/peace, faith) of the Functional Assessment of Chronic Illness Therapy—Spiritual Well-being scale, depression using the Geriatric Depression Scale—Short Form (GDS-SF). RESULTS: The median age of participants was 75 years. Nineteen participants (32%) had clinically significant depression (GDS-SF > 4). Greater spiritual well-being was strongly inversely correlated with depression (Spearman’s correlation −0.55, 95% confidence interval −0.70 to −0.35). In particular, greater meaning/peace was strongly associated with less depression (r = −.60, P < .0001), while faith was only modestly associated (r = −.38, P < .01). In a regression analysis accounting for gender, income, and other risk factors for depression (social support, physical symptoms, and health status), greater spiritual well-being continued to be significantly associated with less depression (P = .05). Between the 2 spiritual well-being subscales, only meaning/peace contributed significantly to this effect (P = .02) and accounted for 7% of the variance in depression. CONCLUSIONS: Among outpatients with heart failure, greater spiritual well-being, particularly meaning/peace, was strongly associated with less depression. Enhancement of patients’ sense of spiritual well-being might reduce or prevent depression and thus improve quality of life and other outcomes in this population

The impact of exposure to shift-based schedules on medical students

Background: With new resident duty-hour regulations, resident work schedules have progressively transitioned towards shift-based systems, sometimes resulting in increased team fragmentation. We hypothesized that exposure to shift-based schedules and subsequent team fragmentation would negatively affect medical student experiences during their third-year internal medicine clerkship. Design: As part of a larger national study on duty-hour reform, 67 of 150 eligible third-year medical students completed surveys about career choice, teaching and supervision, assessment, patient care, well-being, and attractiveness of a career in internal medicine after completing their internal medicine clerkship. Students who rotated to hospitals with shift-based systems were compared to those who did not. Non-demographic variables used a five-point Likert scale. Chi-squared and Fisher's exact tests were used to assess the relationships between exposure to shift-based schedules and student responses. Questions with univariate p≤0.1 were included in multivariable logistic regression models. Results: Thirty-six students (54%) were exposed to shift-based schedules. Students exposed to shift-based schedules were less likely to perceive that their attendings were committed to teaching (odds ratio [OR] 0.35, 95% confidence interval [CI]: 0.13–0.90, p=0.01) or perceive that residents had sufficient exposure to assess their performance (OR 0.29, 95% CI: 0.09–0.91, p=0.03). However, those students were more likely to feel their interns were able to observe them at the bedside (OR 1.89, 95% CI: 1.08–3.13, p=0.02) and had sufficient exposure to assess their performance (OR 3.00, 95% CI: 1.01–8.86, p=0.05). Conclusions: These findings suggest that shift-based schedules designed in response to duty-hour reform may have important broader implications for the teaching environment

Additional file 1: of Positive predictive value of medical student specialty choices

Table S1. Population characteristics. Table S2. Time-related trends for Positive and Negative Predictive Value (PPV and NPV, respectively) and Sensitivity and Specificity within specialties. Table S3a. End of Year 1 – P values for differences in Positive Predictive value (PPV), Negative Predictive Value (NPV), Sensitivity (Sens) and Specificity (Spec) of 1st choice among specialties. Table S3b. End of Year 2 – P values for differences in Positive Predictive value (PPV), Negative Predictive Value (NPV), Sensitivity (Sens) and Specificity (Spec) of 1st choice among specialties. Table S3c. End of Year 3 – P values for differences in Positive Predictive value (PPV), Negative Predictive Value (NPV), Sensitivity (Sens) and Specificity (Spec) of 1st choice among specialties. Table S4. Step 1 scores by match specialty for 2014-15 First Year Residents who graduated from U.S. and Canadian medical schools and for University of Colorado School of Medicine (CUSOM) students who matched during 2011-2015. Table S5. Year 2 predictions (by 1st choice) of postgraduate training specialty categorized by actual postgraduate specialty. Figure S1. Study population flow diagram. (DOCX 102 kb

How U.S. Doctors Die: A Cohort Study of Healthcare Use at the End of Life

ObjectivesTo compare healthcare use in the last months of life between physicians and nonphysicians in the United States.DesignA retrospective observational cohort study.SettingUnited States.ParticipantsFee-for-service Medicare beneficiaries: decedent physicians (n = 9,947) and a random sample of Medicare decedents (n = 192,006).MeasurementsMedicare Part A claims data from 2008 to 2010 were used to measure days in the hospital and proportion using hospice in the last 6 months of life as primary outcome measures adjusted for sociodemographic characteristics and regional variations in health care.ResultsInpatient hospital use in the last 6 months of life was no different between physicians and nonphysicians, although more physicians used hospice and for longer (using the hospital: odds ratio (OR) = 0.98, 95% confidence interval (CI) = 0.93-1.04; hospital days: mean difference 0.26, P = .14); dying in the hospital: OR = 0.99, 95% CI = 0.95-1.04; intensive care unit (ICU) or critical care unit (CCU) days: mean difference 0.35 more days for physicians, P &lt; .001); using hospice: OR = 1.23, 95% CI = 1.18-1.29; number of days in hospice: mean difference 2.06, P &lt; .001).ConclusionThis retrospective, observational study is subject to unmeasured confounders and variation in coding practices, but it provides preliminary evidence of actual use. U.S. physicians were more likely to use hospice and ICU- or CCU-level care. Hospitalization rates were similar

Dynamic-ETL: a hybrid approach for health data extraction, transformation and loading

Abstract Background Electronic health records (EHRs) contain detailed clinical data stored in proprietary formats with non-standard codes and structures. Participating in multi-site clinical research networks requires EHR data to be restructured and transformed into a common format and standard terminologies, and optimally linked to other data sources. The expertise and scalable solutions needed to transform data to conform to network requirements are beyond the scope of many health care organizations and there is a need for practical tools that lower the barriers of data contribution to clinical research networks. Methods We designed and implemented a health data transformation and loading approach, which we refer to as Dynamic ETL (Extraction, Transformation and Loading) (D-ETL), that automates part of the process through use of scalable, reusable and customizable code, while retaining manual aspects of the process that requires knowledge of complex coding syntax. This approach provides the flexibility required for the ETL of heterogeneous data, variations in semantic expertise, and transparency of transformation logic that are essential to implement ETL conventions across clinical research sharing networks. Processing workflows are directed by the ETL specifications guideline, developed by ETL designers with extensive knowledge of the structure and semantics of health data (i.e., “health data domain experts”) and target common data model. Results D-ETL was implemented to perform ETL operations that load data from various sources with different database schema structures into the Observational Medical Outcome Partnership (OMOP) common data model. The results showed that ETL rule composition methods and the D-ETL engine offer a scalable solution for health data transformation via automatic query generation to harmonize source datasets. Conclusions D-ETL supports a flexible and transparent process to transform and load health data into a target data model. This approach offers a solution that lowers technical barriers that prevent data partners from participating in research data networks, and therefore, promotes the advancement of comparative effectiveness research using secondary electronic health data

Immunologic and Virologic Response to Highly Active Antiretroviral Therapy in the Multicenter AIDS Cohort Study

Objectives: To evaluate prior antiretroviral therapy experience and host characteristics as determinants of immunologic and virologic response to highly active antiretroviral therapy (HAART). Methods: We studied 397 men from the Multicenter AIDS Cohort Study (MACS) who initiated HAART between October 1995 and March 1999. CD4 cell count and HIV-1 RNA responses to HAART were measured at the first visit following HAART (short-term) and extending from the first visit to approximately 33 months after HAART (long-term). Prior antiretroviral experience was classified into three groups based on antiretroviral therapy use during the 5 years prior to HAART. Age, race and host genetic characteristics also were assessed for their effects on treatment response. Results: Better short- and long-term CD4 cell and HIV-1 RNA responses were observed in the treatment-naive users. Intermittently and consistently experienced users did not significantly differ in response. Whereas race did not independently affect response, among those initiating HAART with \u3e 400 × 106 CD4 cells/l, younger age and the Δ32 CCR5 genotype were associated with a better short-term CD4 cell response. There was a suggestion that having the protective CCR5 genotype also was associated with a better long-term CD4 cell response. Conclusion: Immunologic and virologic response to HAART was stronger in individuals who had no prior experience with the antiretroviral therapy agents subsequently included in their initial HAART regimen. Age, level of immune competence and immunogenetics appeared to play a role in the subsequent immune reconstitution following use of highly effective HIV therapy

Depletion of cellular cholesterol enhances macrophage MAPK activation by chitin microparticles but not by heat-killed Mycobacterium bovis BCG

When macrophages phagocytose chitin (N-acetyl-d-glucosamine polymer) microparticles, mitogen-activated protein kinases (MAPK) are immediately activated, followed by the release of Th1 cytokines, but not IL-10. To determine whether phagocytosis and macrophage activation in response to chitin microparticles are dependent on membrane cholesterol, RAW264.7 macrophages were treated with methyl-β-cytodextrin (MBCD) and stimulated with chitin. These results were compared with the corresponding effects of bacterial components including heat-killed (HK) Mycobacterium bovis bacillus Calmette-Guèrin (BCG) and an oligodeoxynucleotide (ODN) of bacterial DNA (CpG-ODN). The MBCD treatment did not alter chitin binding or the phagocytosis of chitin particles 20 min after stimulation. At the same time, however, chitin-induced phosphorylation of cellular MAPK was accelerated and enhanced in an MBCD dose-dependent manner. The increased phosphorylation was also observed for chitin phagosome-associated p38 and ERK1/2. In contrast, CpG-ODN and HK-BCG induced activation of MAPK in MBCD-treated cells at levels comparable to, or only slightly more than, those of control cells. We also found that MBCD treatment enhanced the production of tumor necrosis factor-α (TNF-α) and the expression of cyclooxygenase-2 (COX-2) in response to chitin microparticles. In neither MBCD- nor saline-treated macrophages, did chitin particles induce detectable IL-10 mRNA synthesis. CpG-ODN induced TNF-α production, and COX-2 expression were less sensitive to MBCD treatment. Among the agonists studied, our results indicate that macrophage activation by chitin microparticles was most sensitive to cholesterol depletion, suggesting that membrane structures integrated by cholesterol are important for physiological regulation of chitin microparticle-induced cellular activation

Additional file 1: of Dynamic-ETL: a hybrid approach for health data extraction, transformation and loading

Description of the custom D-ETL rules. (DOCX 13 kb