32 research outputs found

    Equity, Motivation, and Leadership: A Matter of Justice

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    Gastroschisis: A national cohort study to describe contemporary surgical strategies and outcomes

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    Abstract Background: Information on adoption of newer surgical strategies for gastroschisis and their outcomes is largely limited to hospital-based studies. The aim of this study was to use a new UK national surveillance system to identify cases and thus to describe the contemporary surgical management and outcomes of gastroschisis. Methods: We conducted a national cohort study using the British Association of Paediatric Surgeons Congenital Anomalies Surveillance System to identify cases between October 2006 and March 2008. Results: All 28 surgical units in the United Kingdom and Ireland participated (100%). Data were received for 95% of notified cases of gastroschisis (n = 393). Three hundred thirty-six infants (85.5%) had simple gastroschisis; 45 infants (11.5%) had complex gastroschisis. For 12 infants (3.0%), the type of gastroschisis could not be categorized. Operative primary closure (n = 170, or 51%) and staged closure after a preformed silo (n = 120, or 36%) were the most commonly used intended techniques for simple gastroschisis. Outcomes for infants with complex gastroschisis were significantly poorer than for simple cases, although all deaths occurred in the simple group. Conclusions: This study provides a comprehensive picture of current UK practice in the surgical management of gastroschisis. Further follow-up data will help to elucidate additional prognostic factors and guide future research. © 2010 Elsevier Inc. All rights reserved. www.elsevier.com/locate/jpedsurg ☆ Contributions: A.O. assisted with the design of the study, carried out some analysis, and wrote a first draft of the paper. S.M. had the original idea for the investigation of management of gastroschisis, assisted with the design of the study, provided clinical input, and contributed to the analysis and writing the paper. P.J. provided clinical input to the study and contributed to the analysis and writing of the paper

    International home economics

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    The conference was planned to serve the interests of those who wish to work in home economics programs abroad and those who are concerned with the education of international students in the universities and colleges of the United States. Approximately 165 home economists from other states and from foreign countries I including the African and Latin American countries I participated in the conference.https://lib.dr.iastate.edu/card_reports/1026/thumbnail.jp

    New genetic loci link adipose and insulin biology to body fat distribution.

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    Body fat distribution is a heritable trait and a well-established predictor of adverse metabolic outcomes, independent of overall adiposity. To increase our understanding of the genetic basis of body fat distribution and its molecular links to cardiometabolic traits, here we conduct genome-wide association meta-analyses of traits related to waist and hip circumferences in up to 224,459 individuals. We identify 49 loci (33 new) associated with waist-to-hip ratio adjusted for body mass index (BMI), and an additional 19 loci newly associated with related waist and hip circumference measures (P < 5 × 10(-8)). In total, 20 of the 49 waist-to-hip ratio adjusted for BMI loci show significant sexual dimorphism, 19 of which display a stronger effect in women. The identified loci were enriched for genes expressed in adipose tissue and for putative regulatory elements in adipocytes. Pathway analyses implicated adipogenesis, angiogenesis, transcriptional regulation and insulin resistance as processes affecting fat distribution, providing insight into potential pathophysiological mechanisms

    A survey of patients\u27 experience of pain and other symptoms while receiving care from palliative care services

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    Context In Australia, patients at the end of life with complex symptoms and needs are often referred to palliative care services (PCSs), but little is known about the symptoms of patients receiving palliative care in different settings. Objective To explore patients\u27 levels of pain and other symptoms while receiving care from PCSs. Method PCSs registered through Australia\u27s national Palliative Care Outcomes Collaboration (PCOC) were invited to participate in a survey between 2008 and 2011. Patients (or if unable, a proxy) were invited to complete the Palliative Care Outcome Scale. Results Questionnaires were completed for 1800 patients. One-quarter of participants reported severe pain, 20% reported severe \u27other symptoms\u27, 20% reported severe patient anxiety, 45% reported severe family anxiety, 66% experienced depressed feelings and 19% reported severe problems with self-worth. Participants receiving care in major cities reported higher levels of depressed feelings than participants in inner regional areas. Participants receiving care in community and combined service settings reported higher levels of need for information, more concerns about wasted time, and lower levels of family anxiety and depressed feelings when compared to inpatients. Participants in community settings had lower levels of concern about practical matters than inpatients. Conclusions Patients receiving care from Australian PCSs have physical and psychosocial concerns that are often complex and rated as \u27severe\u27. Our findings highlight the importance of routine, comprehensive assessment of patients\u27 concerns and the need for Specialist Palliative Care clinicians to be vigilant in addressing pain and other symptoms in a timely, systematic and holistic manner, whatever the care setting

    Breathlessness during the last week of life in palliative care: An Australian prospective, longitudinal study

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    Context: Breathlessness is a major cause of suffering and distress, and little is known about the trajectory of breathlessness near death. Objectives: To determine the trajectory and clinical-demographic factors associated with breathlessness in the last week of life in patients receiving specialist palliative care. Methods: This was a prospective, longitudinal cohort study using national data on specialist palliative care from the Australian Palliative Care Outcomes Collaboration. We included patients in the Australian Palliative Care Outcomes Collaboration who died between July 1, 2013 and June 30, 2014 with at least one measurement of breathlessness on a 0-10 numerical rating scale in the week before death. The trajectory and factors associated with breathlessness were analyzed using multivariate random-effects linear regression. Results: A total 12,778 patients from 87 services (33,404 data points) were analyzed. The average observed breathlessness was 2.1 points and remained constant over time. Thirty-five percent reported moderate to severe distress (numerical rating scale ≥4) at some time in their last week. Factors associated with higher breathlessness were younger age, male gender, cardiopulmonary involvement, concurrent fatigue, nausea, pain, sleeping problems, higher Australia-modified Karnofsky Performance Status, and clinical instability in the multivariate analysis. Respiratory failure showed the largest association (mean adjusted difference 3.1 points; 95% confidence interval, 2.8-3.4). Conclusion: Although breathlessness has been reported to worsen in the last months, the mean severity remained stable in the final week of life. In specialized palliative care, one in three people experienced significant breathlessness especially in respiratory disease

    The PCOC Symptom Assessment Scale (SAS): A valid measure for daily use at point of care and in palliative care programs

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    BACKGROUND: Very few measures are used successfully as part of routine care within national palliative care outcome programs. Only a handful of studies examine these measures. The aim of this study is to evaluate the validity of a measure used in a national outcomes program: the Palliative Care Outcomes Collaboration Symptom Assessment Scale (PCOC SAS).METHODS: A retrospective multi-site cohort study with secondary analysis of routinely collected patient-level data to assess PCOC SAS's internal consistency, construct validity, reliability, interpretability, acceptability and sensitivity. The analyses used two sets, with data collected by inpatient and community palliative care services registered with the Australian national PCOC.RESULTS: Dataset one included 1,117 patients receiving palliative care from 21 services. Dataset two included 5,294 patients receiving palliative care from 119 PCOC services. PCOC SAS demonstrated the ability to detect and discriminate distress by palliative care phase, functional status and diagnosis. Excellent and good convergent and discriminant validity were demonstrated. Fair through to substantial inter-rater and intra-rater reliability levels were evidenced. Sufficient interpretability resulted along with necessary levels of acceptability and sensitivity.CONCLUSION: PCOC SAS is a valid and reliable patient-reported outcome measure suitable for use in routine clinical care with patients requiring palliative and or end-of-life care, including in national outcomes programs.</p

    Perceptions of the care received from Australian palliative care services: A caregiver perspective

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    Background: Caregiver satisfaction and experience surveys help health professionals to understand, measure, and improve the quality of care provided for patients and their families. Objective: Our aim was to explore caregiver perceptions of the care received from Australian specialist palliative care services. Method: Caregivers of patients receiving palliative care in services registered with Australia\u27s Palliative Care Outcomes Collaboration were invited to participate in a caregiver survey. The survey included the FAMCARE-2 and four items from the Ongoing Needs Identification: Caregiver Profile questionnaire. Results: Surveys were completed by 1,592 caregivers from 49 services. Most respondents reported high satisfaction and positive experiences. Caregivers receiving care from community-based palliative care teams were less satisfied with the management of physical symptoms and comfort (odds ratio [OR] = 0.29; 95% confidence interval [CI 95%] = 0.14, 0.59), with patient psychological care (OR = 0.56; CI 95% = 0.32, 0.98), and with family support (OR = 0.52; CI 95% = 0.35, 0.77) than caregivers of patients in an inpatient setting. If aged over 60 years, caregivers were less likely to have their information needs met regarding available support services (OR = 0.98; CI 95% = 0.97, 0.98) and carer payments (OR = 0.99; CI 95% = 0.98, 1.00). Also, caregivers were less likely to receive adequate information about carer payments if located in an outer regional area (OR = 0.41; CI 95% = 0.25, 0.64). With practical training, caregivers receiving care from community services reported inadequate information provision to support them in caring for patients (OR = 0.60; CI 95% = 0.45, 0.81). Significance of Results: While our study identified caregivers as having positive and satisfactory experiences across all domains of care, there is room for improvement in the delivery of palliative care across symptom management, as well as patient and caregiver support, especially in community settings. Caregiver surveys can facilitate the identification and evaluation of both patients\u27 and caregivers\u27 experiences, satisfaction, distress, and unmet needs
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