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Mothering a child with hidden impairments.

When a mother has a child with a chronic impairment, the occupational demands of mothering extend to address the specialized needs of that child. This research explores how the type of hidden impairment in a child influences family routines and occupations. This qualitative study consisted of interviews with 22 mothers of children with attention deficit hyperactivity disorder (ADHD), a behavioral disorder, and 22 mothers of children with cystic fibrosis, a physical disorder. Open-ended questions were used to explore family demands, resources, time use, routines, concerns, and support. The transcripts of these interviews were analyzed in terms of consistency with existing literature on parenting the child with hidden disability, and for emergent themes. In this analysis the experiences of mothers of children with cystic fibrosis were consistent with research findings on other chronic conditions, with these mothers reporting that family provides them with extensive physical and emotional support. Although mothers of children with cystic fibrosis reported a persistent emotional sorrow, they felt they were able to "normalize" their daily routines. In contrast, mothers of children with ADHD reported little family support, high perception of child-related demands, and less confidence in their success in mothering these children. In describing their daily routines, these mothers often stated that there was no such thing as a "normal" day. They felt constantly "on alert" and did not feel that they had "normal" routines. Based on this study, mothers of children with ADHD felt distress because their child did not easily conform to social standards, and were likely to express exhaustion in their role as "mother." The pattern of responses offered by these participants differs significantly from that of the participants whose children have cystic fibrosis, and from the usual pattern of coping with chronic childhood disability documented in the literature.

Adult↗

Disentangling adiposity-related and non-adiposity-related genetic pathways for type 2 diabetes.

OBJECTIVE: To identify circulating proteins associated with type 2 diabetes (T2D) risk through pathways not fully explained by body mass index (BMI), and to assess therapeutic actionability. RESEARCH DESIGN AND METHODS: We applied GWAS-by-subtraction within a genomic structural equation model to European ancestry summary statistics for T2D (74,124 cases, 824,006 controls) and BMI (n = 681,275), partitioning T2D liability into BMI-related and BMI-subtracted components. We then performed proteome-wide Mendelian randomization (MR) using cis-protein quantitative trait loci from four plasma proteomics cohorts: ARIC, deCODE, Fenland, and the UK Biobank Pharma Proteomics Project. Prioritized proteins passed sensitivity analyses with alternative MR methods and were supported by colocalization evidence. Tissue-resolution regulatory support was assessed using cis-eQTL colocalization across GTEx and pancreatic islet, subcutaneous adipose, and whole-blood resources. Actionability was evaluated using the druggable genome and Open Targets. RESULTS: GWAS-by-subtraction attenuated the genetic correlation between BMI and BMI-subtracted T2D from 0.54 (SE 0.02) to 0.35 (SE 0.02). Proteome-wide MR prioritized 29 proteins for BMI-subtracted T2D. Thirteen showed eQTL colocalization in at least one tissue, implicating liver and intermediary metabolism (GCDH, NOTCH2), pancreatic islet biology (CTRB2, MANBA), adipose and Wnt signaling (RSPO3, GALNT3), and whole blood regulatory signals (PAM, SNUPN). Sixteen proteins were classified within druggable-genome Tiers 1-3, and five had existing Open Targets compounds. CONCLUSIONS: Integrating GWAS-by-subtraction, proteome-wide MR, and colocalization nominated 29 proteins associated with T2D liability not fully explained by BMI. These findings highlight genetically supported targets for follow-up studies of T2D therapies that complement weight-centered approaches.

Journal Article↗

Complementary and alternative medicine therapies in pediatric oncology patients.

Complementary and alternative medicine(CAM) therapies are commonly used by pediatric oncology patients. CAM therapies may be divided into four categories: biochemical, lifestyle, biomechanical, and bioenergetic. Surveys within the past decade estimate the prevalence of CAM use in pediatric oncology to be 31 to 87%, and in many cases the treating physician is unaware of the patients' CAM use. It is thus important to systematically ask patients and their parents about CAM therapies. Reliable resources are available for families and health care providers. Open, respectful communication, even in the absence of evidence, is crucial in both helping and protecting patients, and in avoiding conflicts.

Child↗

The wildcat toolbox: a set of perl script utilities for use in peptide mass spectral database searching and proteomics experiments.

We describe in this communication a set of functional perl script utilities for use in peptide mass spectral database searching and proteomics experiments, known as the Wildcat Toolbox. These are all freely available for download from our laboratory Web site (http://proteomics.arizona.edu/toolbox.html) as a combined zip file, and can also be accessed via the Proteome Commons Web site (www.proteomecommons.org) in the tools section. We make them available to other potential users in the spirit of open source software development; we do not have the resources to provide any significant technical support for them, but we hope users will share both bugs and improvements with the community at large.

Algorithms↗

Publishing biomedical journals on the World-Wide Web using an open architecture model.

BACKGROUND: In many respects, biomedical publications are ideally suited for distribution via the World-Wide Web, but economic concerns have prevented the rapid adoption of an on-line publishing model. PURPOSE: We report on our experiences with assisting biomedical journals in developing an online presence, issues that were encountered, and methods used to address these issues. Our approach is based on an open architecture that fosters adaptation and interconnection of biomedical resources. METHODS: We have worked with the New England Journal of Medicine (NEJM), as well as five other publishers. A set of tools and protocols was employed to develop a scalable and customizable solution for publishing journals on-line. RESULTS: In March, 1996, the New England Journal of Medicine published its first World-Wide Web issue. Explorations with other publishers have helped to generalize the model. CONCLUSIONS: Economic and technical issues play a major role in developing World-Wide Web publishing solutions.

Computer Communication Networks↗

The potential of open learning in animal breeding.

Animal breeding education is presently facing many challenges. These include rapid changes in breeding knowledge and technology, resource and funding restrictions, and altering demographics of the learner and the animal breeding industry. These challenges can be met via an open learning educational format. This nontraditional approach is based on the needs of individual learners, not the interests of the teacher or the institution. An important feature of open learning is its appropriateness for the professional development audience. Delivery methods include interactive distance courses on the Web, computer-assisted learning, and team-based study. The Canadian dairy breeding industry has expressed the need for ongoing professional development to understand and adopt new animal breeding technologies. The University of Guelph responded by delivering a series of animal breeding short courses (Executive Certificate Program in Animal Breeding) to industry decision makers in 1997. A version modified specifically for farmers and breeding industry personnel was offered in 1998. Through the collaboration of experts from various agricultural institutions and the use of a learner-centered format, this professional development initiative was a pedagogical and financial success. This paper describes how the open learning approach differs from traditional university teaching. Using the University of Guelph example in animal breeding professional development, the framework for a successful open learning program will be examined. The best practices for effective adult education will also be identified and discussed within this case study.

Adult↗

Crew resource management: applications in healthcare organizations.

Healthcare organizations continue their struggle to establish a culture of open communication and collaboration. Lessons are learned from the aviation industry, which long ago acknowledged that most errors were the result of poor communication and coordination rather than individual mistakes. The author presents a review of how some healthcare organizations have successfully adopted aviation's curriculum called Crew Resource Management, which promotes and reinforces the conscious, learned team behaviors of cooperation, coordination, and sharing.

Aviation↗

DNA damage in peripheral blood lymphocytes of individuals residing near a wastewater drain and using underground water resources.

Mahal is a linear village settlement situated about 0.5 km from an open waste-water drain, the Tung Dhab drain, which carries effluents from local industrial sites. Villagers generally have a low-to-middle socio-economic status and use ground water or a combination of ground water and tap water for drinking and for their other daily activities. The land in and around Mahal is used for agriculture and is irrigated by water from the Tung Dhab. The drain water contains heavy metals, and there is a possibility that these and other contaminants may reach the ground water table of Mahal and thereby compromise the health of the residents. The comet assay was performed on peripheral blood lymphocytes from Mahal villagers and revealed statistically significant increases in DNA damage as compared to a control group that does not use ground water. DNA damage was also significantly related to the age of the villagers and to the length of residence in the village. In the absence of other environmental exposures, it is concluded that the elevated DNA damage in the villagers is a consequence of continuous utilization of contaminated ground water.

Adult↗

Factors contributing to patient nonattendance at open-access endoscopy.

Patients who miss endoscopy appointments cause inefficient utilization of medical resources. Because national nonattendance rates are as high as 27% and reasons for nonattendance have not been well studied, we sought to quantitate nonattendance at our tertiary care institution. We conducted a retrospective records review of the institutional database to identify patients who did not attend a scheduled endoscopy appointment between January 2000 and December 2003. Nonattendance was defined as either not showing up for an appointment or canceling it on the day it was scheduled. At our institution, patient care assistants contact such patients to document their reasons in the database. Of 36,480 patients scheduled for outpatient endoscopy, 1,490 (4.1%) did not show up because of either facility-related (44.3%; e.g., scheduling errors) or patient-related (55.7%; e.g., noncancellation, illness, or hospitalization) reasons. Our 4.1% nonattendance rate over 4 years is considerably lower than that reported by other endoscopy centers.

Ambulatory Care Facilities↗

New technologies and DNA resources for high throughput biology.

The rapid increase in DNA sequencing information is opening up new opportunities in genetics. The current methods for processing and analysing genetic data are, however, slow and labour intensive. The next wave of genetic analysis will rely on the analysis of DNA variation from large population based cohorts. These studies will provide important new data on population and disease genetics and have the potential to make a significant impact on our current healthcare practices. In order for these studies to deliver, we need to develop a new generation of ultra-rapid DNA technologies which will allow us to generate, capture and efficiently exploit these new data. This chapter describes the recent advances in DNA sequencing and genotyping technologies that will lead to 100-1000-fold increases in our ability to produce the DNA data we need to explore and exploit the new genetic opportunities to the full.

DNA Mutational Analysis↗

Project 2000: a study of expected and experienced stressors and support reported by students and qualified nurses.

The present study was conducted in the light of major reforms to nurse education which have taken place in the United Kingdom since 1989. The study aimed to identify initially perceived stressors and coping resources and subsequently, to compare these with actually reported stressors and available resources, during a critical period in nurses' careers. Three groups of nurses participated who were undertaking, or had recently completed, the first Project 2000 course at a university in the south of England. Participants were given an open-ended questionnaire and asked to describe potential difficulties, and the coping resources they anticipated using, in a subsequent 6-month period. Following analysis of the descriptors a structured questionnaire was developed to measure actually experienced difficulties and coping resources that were reported; this was completed by the three groups 6 months after the initial phase of the study. Both student and staff nurse groups reported fewer stressors and more resources than they had predicted. Students anticipated difficulties with competence but actually reported financial difficulties. They experienced support from mentors although this was not anticipated. Newly qualified staff nurses experienced fewer difficulties with meeting personal expectations of the role than they had anticipated. They reported more use of emotion-focused coping and less professional support than the student groups. The results are discussed in relation to training needs.

Adolescent↗

Acute abdominal aortic aneurysms: cost analysis of endovascular repair and open surgery in hemodynamically stable patients with 1-year follow-up.

PURPOSE: To retrospectively assess the in-hospital and 1-year follow-up costs of endovascular aneurysm repair and conventional open surgery in patients with acute infrarenal abdominal aortic aneurysm (AAA) by using a resource-use approach. MATERIALS AND METHODS: Institutional Review Board approval was obtained, and informed consent was waived. In-hospital costs for all consecutive patients (61 men, six women; mean age, 72.0 years) who underwent endovascular repair (n = 32) or open surgery (n = 35) for acute infrarenal AAA from January 1, 2001, to December 31, 2004, were assessed by using a resource-use approach. Patients who did not undergo computed tomography before the procedure were excluded from analysis. One-year follow-up costs were complete for 30 patients who underwent endovascular repair and for 34 patients who underwent open surgery. Costs were assessed from a health care perspective. Mean costs were calculated for each treatment group and were compared by using the Mann-Whitney U test (alpha = .05). The influence of clinical variables on the total in-hospital cost was investigated by using univariate and multivariate analyses. Costs were expressed in euros for the year 2003. RESULTS: Sex, age, and comorbidity did not differ between treatment groups (P > .05). The mean total in-hospital costs were lower for patients who underwent endovascular repair than for those who underwent open surgery (euro20 767 vs euro35 470, respectively; P = .004). The total costs, including those for 1-year follow-up, were euro23 588 for patients who underwent endovascular repair and euro36 448 for those who underwent open surgery (P = .05). The results of multivariate analysis indicated that complications had a significant influence on total in-hospital cost; patients who had complications incurred total in-hospital costs that were 2.27 times higher than those for patients who had no complications. CONCLUSION: Total in-hospital costs and total overall costs, which included 1-year follow-up costs, were lower in patients with acute AAA who underwent endovascular repair than in those who underwent open surgery.

Acute Disease↗

[Barriers to the fair allocation of healthcare resources].

The gap between infinite healthcare needs and finite health resources imposes on practicing physicians a dual commitment to patients' needs and to the fair allocation of health care resources. The ethical principles of a fair allocation of resources are egalitarianism, utilitarianism and a transition from individual to group-based ethics. These principles are ambiguous and occasionally conflicting. Their implementation is further impeded by practice norms, such as private practice by physicians employed by public institutions, incentives for physicians to save, and marketing of clinical interventions of unproven efficacy. Proposed approaches to these barriers to the fair allocation of resources include respect of patient autonomy with full disclosure of the limitations in the services provided by the health plan; adherence to clinical practice guidelines; and an open access for patients to second medical opinion. I believe that the fairness of resource allocation may be further improved by the prohibition of private practice by physicians employed in public health care institutions, and by enhancement of physicians' self-awareness of subconscious discrimination against some patients.

Delivery of Health Care↗

Bedside tracheostomy in the intensive care unit: a prospective randomized trial comparing open surgical tracheostomy with endoscopically guided percutaneous dilational tracheotomy.

OBJECTIVES: Objectives of the study were 1) to analyze the complication incidence and resource utilization of two methods of bedside tracheostomy and 2) to define selection criteria for bedside tracheostomy. STUDY DESIGN: Prospective randomized trial in the setting of a tertiary care center at a university hospital. METHODS: One hundred sixty-four consecutive intubated patients selected for elective tracheostomy were enrolled. One hundred patients met selection criteria for bedside tracheostomy and were randomly assigned to either open surgical tracheostomy (50) or endoscopically guided percutaneous dilational tracheotomy(50). The remaining 64 patients received open surgical tracheostomies in the operating room. Main outcome measures were 1) perioperative and postoperative complication incidence and 2) resource utilization. RESULTS: Patients meeting our selection criteria for bedside tracheostomy had a significantly reduced perioperative complication rate compared with those who failed to meet these criteria, and subsequently underwent tracheostomy placement in the operating room (5% vs. 20%, P less than or equal to.01). No statistically significant difference was found in the perioperative complication incidence between the two methods of bedside tracheostomy. However, percutaneous tracheostomy placement at the bedside resulted in a significant increase in postoperative complication incidence (16% vs. 2%, P <.05) and incurred an additional patient charge of $436 per bedside procedure. CONCLUSIONS: This investigation prospectively confirms the safety of bedside tracheostomy placement in properly selected patients. Complication incidence and resource utilization are defined for two methods of bedside tracheostomy. The results of this study confirm that open surgical tracheostomy represents the standard of care in bedside tracheostomy placement by providing a more secure airway at a markedly reduced patient charge. These findings will aid in the development of protocols and pathways for surgical airway management in critically ill patients to maximize cost-effective, high-quality care.

Adult↗

[Intensive care medicine and its place among the medical specialties].

The cost of providing intensive care is enormous. This resource consumption is focused on a relatively small number of patients. Over the past 30 years, despite new technologies and escalating costs, mortality rates for major disease conditions treated in the intensive care units remain unchanged. The studies done on organizational aspects of intensive care medicine do provide a strong argument that full-time intensivists improve the organization of intensive care, reduce mortality and increase efficiency of resource use. There are two general models of intensive care organization: open and closed. In the open model, an intensivist, if available, may provide consultation in particular department as needed. For patients with complex illness or prolonged length of stay, open systems are fragmented and poorly co-ordinated. In contrast, the closed system involves transfer of the patient to the exclusive care of a team of intensivists upon admission to the intensive care unit. The closed system typically provides formal triage, and consistent control, and mandated care by the intensivist team. Significant reductions in mortality rates and improvements in resource efficiency are seen with use of intensivist teams, a closed intensive care unit model and systematic triage.

Critical Care↗

An Aegean island earthquake protection strategy: an integrated analysis and policy methodology.

Viewing an insular setting as a distinct risk environment, an effort is made here to develop a methodology for identifying core issues related to earthquake risk and disaster protection policy, adjusted to the 'specificities' of such a context. The methodology's point of departure is the inherent condition of the 'island operating as a closed system', requiring an attempt to assess and optimise local capacity (social, political, economic, institutional and technical) to deal with an earthquake emergency. The island is then treated as an 'open system', implying that in the event of a disaster, it should be able to maximise its ability to receive and distribute external aid and to manage effectively population evacuation and inflows/outflows of aid resources. Hence, an appropriate strategic policy approach could be developed by integrating the 'open' and 'closed' system components of an island setting. Three islands from the Aegean Archipelagos in Greece--Chios, Kos and Nissyros--serve as case study areas.

Disaster Planning↗

[The role of economic analysis in health care].

Since the needs in health care are much larger than the resources available to satisfy these needs, economic analysis can play a useful role in health care. Economic analysis can contribute to a better allocation of the available resources, through a comparison of the relative costs of different forms of health care delivery. A combination of correct, detailed information about the costs and effects of health care interventions is a necessary condition for an improved allocation of resources in health care, which is illustrated with a comparison of the effects and costs of open versus laparoscopic cholecystectomies. A better view on the cost structure of different techniques can result in a (more) efficient allocation of scarce resources. A multidisciplinary approach is a necessary condition for successful economic evaluations in health care.

Cholecystectomy↗

Comparison of open, laparoscopic, and hand-assisted approaches to live-donor nephrectomy.

BACKGROUND: Minimally invasive donor nephrectomy has become a favored procedure for the procurement of kidneys from live donors. The optimal minimally invasive surgical approach has not been determined. In the current work, we compared the outcome of kidneys procured using the traditional open approach with two minimally invasive techniques: the standard laparoscopic procedure and a hand-assist procedure. METHODS: The function of live-donor kidneys procured by open versus minimally invasive procedures was compared (procedures compared were the traditional open donor nephrectomy [ODN], the standard laparoscopic [LAP] approach, and the hand-assisted [HA] laparoscopic technique). The length of donor operation, donor length of stay in the hospital, surgical complications, and cost of hospitalization for three groups of patients were assessed in a series of 150 live-donor nephrectomies. RESULTS: We found that both minimally invasive procedures yielded kidney allografts with excellent early function and a minimum of complications in the donor. The open procedure was associated with a reduced operative time but increased donor length of stay in the hospital. Resource utilization analysis revealed that both minimally invasive techniques were associated with a slight increase in costs compared with the open procedure, despite a shorter hospital stay. CONCLUSIONS: Minimally invasive donor nephrectomy is safe and effective for procuring normally functioning organs for live-donor transplantation. Of the two minimally invasive approaches examined, the hand-assisted technique was found to afford a number of important advantages, including facilitating teaching of residents and students, that it is more readily mastered by transplant surgeons, and that it may provide an additional margin of safety for the donor.

Adult↗