Individual Subscribers Research Articles

Editors’ Note

Editors’ Note James M. DuBois and Ana S. Ilitis This issue of Narrative Inquiry in Bioethics engages a series of compelling questions through a narrative symposium, a case study, and two qualitative research articles. How does one’s own experience of illness affect the way one thinks about bedside ethics or the way one performs ethics consultations? The narrative symposium edited by Tod Chambers, “Taking Bioethics Personally,” presents a collection of stories by bioethicists about their personal experiences of illness and how these experiences affected how they practice bioethics. This symposium asks clinical bioethicists, who are accustomed to facilitating ethical discussions at the bedside of strangers, to examine how their own experience of illness and of the healthcare system changed the way they think about healthcare and healthcare ethics. In his commentary article, Bradley Lewis observes how the stories quickly broke down “the binary of personal and professional” and led him reflect on how he will deal with his own impairments and eventual demise. Again, we see the power of narrative approaches in bioethics to foster deep reflection and even wisdom as abstract questions in bioethics are transformed into existential questions. Should a healthcare provider honor parental requests to refrain from telling an intelligent adolescent her diagnosis and terminal prognosis? Erica Salter engages this question as she relates her experiences as a clinical ethicist serving a family in a situation that is so difficult that one feels empathy for everyone involved. The case raises a series of difficult legal and ethical questions about the rights of terminally ill minors and of the parents who care for them, as well as the responsibilities of pediatric healthcare workers who may have very strong convictions that conflict with those of parents. What can research regulators learn from qualitative studies on how institutional review board members and research participants make decisions regarding the risks and benefits of participating in a study? The article by Ann Freeman Cook, Helena Hoas, and Jane Clare Joyner shares data from two studies recently completed by their team and draws conclusions that may inform current debates about possible revisions to federal research regulations. Do patients reliably know why their physicians admitted them to the hospital? Zackary Berger, Anne Dembitzer, and Mary Catherine Beach interviewed patients and compared their understanding of why they were admitted to information found in their medical charts. Nearly half of all patients interviewed did not express a proper understanding of the reasons for their admission, which raises a whole series of new questions about effective communication and the quality of informed consent for a treatment option that is frequently expensive and burdensome. News about Narrative Inquiry in Bioethics We recently received news that Narrative Inquiry in Bioethics received Honorable Mention in the 2012 PROSE Award’s category of Best New Journal in Science, Technology, and Medicine. We thank the Johns Hopkins University Press, our Editorial Board, our sponsors, our peer reviewers, and all of our authors for making this possible. [End Page v] We are also pleased to announce that we received a gift from the BF Charitable Foundation to support operations and promote subscriptions. We thank the Foundation for its generous support. As a first step in our promotional campaign, we are working with the Johns Hopkins University Press to develop a new website for Narrative Inquiry in Bioethics. This new website will provide an attractive and user-friendly platform for those who wish to access the journal online, learn about current calls for stories, identify creative uses for our published materials (in the classroom, in research, and in policy work), or find our guidelines for authors. The promotion campaign is inspired by the conviction that—even as libraries tighten their budgets and focus on electronic journal packages—it is possible to build a loyal readership, a group of individual subscribers who await the next issue. Watch for an exciting pricing experiment by the Johns Hopkins University Press targeting individual readers! [End Page vi] Copyright © 2013 The Johns Hopkins University Press

E-ditorial: State of the Journal

E-ditorial: State of the Journal

Spirituality, Stress, and Retention of Nurses in Critical Care

Providing care to patients in critical care units generates stress. Helping the critical care nurse manage this stress can lead to better patient experiences and higher nursing retention. While providing holistic care to patients produces better outcomes, addressing the holistic needs of the caregiver must also be considered. Included in the holistic needs of the nurse is their spiritual well-being. A study that measures spiritual well-being, stress, and nursing retention is the focus of this review.

New-Onset Diabetes With a History of Dyslipidemia Predicts Pancreatic Cancer

This study aimed to investigate whether the reported relationship between diabetes and pancreatic cancer (PC) could result from detection bias and whether dyslipidemia and/or new-onset diabetes (diagnosed within 1 year) could predict PC. A random sample of 1 million subjects covered by National Health Insurance was recruited. From 2003 to 2005, 495,493 men and 503,901 women without PC were followed up. Cox regression was used to evaluate the adjusted relative risk considering potential PC detection examinations and covariates. Diabetic patients had a significantly higher probability of receiving examinations that might lead to PC diagnosis. In Cox proportional hazards regression models, diabetes was not a significant predictor, but dyslipidemia was significantly associated with an approximately 40% higher risk of PC. Age, living in more urbanized regions, and potential PC detection examinations were significant covariates. Patients with new-onset diabetes and previous dyslipidemia had a remarkably higher risk compared with those without either condition (relative risk [95% confidence interval], 2.512 [1.169-5.398]). Dyslipidemia, but not diabetes, is a significant risk factor for PC. The link between diabetes and PC is likely due to confounders and detection bias. Patients with new-onset diabetes and a history of dyslipidemia are at an especially high risk of PC.

Assessment of bone quality and strength with new technologies

To give an overview of advanced in-vivo imaging techniques for assessing bone quality beyond bone mineral density that have considerably advanced in recent years. Quantitative computed tomography and finite element analysis improve fracture risk prediction at the spine, and help to better understand the pathophysiology of skeletal diseases and response to therapy by quantifying bone mineral density in different bone compartments, determining bone strength, and assessing bone geometry. With new high-resolution techniques, trabecular structure at the spine, forearm, and tibia, and cortical porosity at the forearm and tibia can be measured. Hip structure analysis and trabecular bone score have extended the usefulness of dual X-ray absorptiometry. New advanced three-dimensional imaging techniques to quantify bone quality are mature and have proven to be complimentary methods to dual X-ray absorptiometry enhancing our understanding of bone metabolism and treatment.

Covariation in Community- and Individual-Based Community Capacity and Health Behavior

Community capacity is defined as the degree to which the human, physical, and potential resources of a neighborhood are organized based on mutual solidarity among the residents. The aim of this study was to elucidate the relationship between community capacity and health behaviors in Seoul, South Korea. Multilevel models controlling for socioeconomic variables were used to measure the association between community capacity and health behaviors in 25 districts and 404 subdistricts (n = 14 228). Community capacity was determined to be significant at the more local community level, as it was a significant variable in the subdistrict analysis for explaining health behaviors such as smoking, drinking, and exercising. Community capacity exists not only at the individual level but also at the community level. High community capacity further enhanced the positive effects of individual capacity on health behavior and further weakened the negative effects.

Race/Ethnic Discrimination and Preventive Service Utilization in a Sample of Whites, Blacks, Mexicans, and Puerto Ricans

Race/ethnic discrimination is associated with poorer mental and physical health, worse health behaviors, and increased mortality, in addition to overall race/ethnic disparities in health. More specifically, it has been suggested as a possible determinant of the significant race/ethnic differences in the quantity and quality of medical care received by individuals in the United States. The current study examines the association between 3 measures of racial/ethnic discrimination (Experiences of Discrimination, Everyday Discrimination Scale and discrimination in health care) and 6 types of preventive services (mammogram, clinical breast examination, Pap smear, colonoscopy/sigmoidoscopy, blood pressure screening, and diabetes screening). Frequencies and correlations are run within a population-based sample of 1699 respondents from Chicago that includes whites, African Americans, Mexicans, and Puerto Ricans. Adjusted logistic regression models are run separately by race/ethnicity. Findings show that levels of perceived discrimination vary between all race/ethnic groups, with blacks consistently reporting the highest levels and whites the lowest. Discrimination is only inconsistently related to obtaining screenings for cancer, hypertension, and diabetes. The few significant relationships found differed both by measure of discrimination and the respondents' race and ethnicity. Given the growing diversity in the United States and the prevalence of discrimination, more research regarding its impact on health care utilization is needed. Only when all the factors influencing patient behaviors are better understood will policies and interventions designed to improve them be successful. These are important steps that will help attain our national goals of eliminating race/ethnic disparities in health.

Pediatric intraocular lens power calculations

To implant an appropriate intraocular lens (IOL) in a child, we must measure the eye well, calculate the IOL power accurately and predict the refractive change of the pseudophakic eye to maturity. The present review will concentrate on recent studies dealing with these issues. Immersion A-scan biometry is superior in measuring the axial length of children. Current IOL power calculation formulas are very accurate in adults, but significantly less accurate in children. Several studies point to the high prediction errors encountered particularly in shorter eyes with all available IOL formulas. Postoperative refraction target remains controversial, but low degrees of overcorrection (i.e. hyperopia) may not adversely affect eventual best-corrected visual acuity. Although pediatric IOL power calculations suffer from significant prediction error, these errors can be decreased by careful preoperative measurements. IOL power calculation formulas are most accurate in the older, more 'adult'-sized eye. The smallest eyes have the most prediction error with all available formulas. Individual circumstances and parental concerns must be factored into the choice of a postoperative refractive target.

Evidence-based Imaging in Lung Cancer

Lung cancer is the leading cause of cancer-related mortality in the United States. To assess prognosis, optimize treatment, and avoid potentially harmful futile treatments it is critical to have a complete understanding of the tumor's histology, molecular characteristics, and stage at the time of diagnosis. From the radiologist's perspective, the goal is to provide as accurate a stage as possible before the use of minimally invasive or invasive procedures to guide the site of biopsy and confirm a final pathologic stage. This article reviews the evidence behind the imaging technologies used in the staging evaluation of lung cancer.

Dietary Guidelines

Dietary Guidelines

Developing a Progressive Mobility Activity Protocol

Orthopaedic nurses specialize in preventing musculoskeletal disorders and complications in postoperative patients through early mobility. A review of the literature reveals recent studies that discuss the benefits of early mobility in intensive care patients. Early progressive mobility programs use a systematic progression of activity to prevent deconditioning and its complications in critically ill patients. Increasing patient mobility in the intensive care unit can help the orthopaedic nurse continue the promotion of wellness and self-care and the prevention of injury in the care of individuals with musculoskeletal disorders. This article includes a description of the development of an innovative progressive mobility activity protocol for intensive care unit patients in a community hospital, using a detailed, methodical approach to identify the need for practice change and to create a plan for achieving this change.

Open Access Musings

Open Access Musings

Open Access and an Additional Publishing Option

When a well-established journal such as Medical History has a change in ownership and editorial office, the attendant arrangements require time. I am delighted to report that the shifts have occurred thanks to the Wellcome Trust’s support and Cambridge University Press’s boundless energy. The editorial office has now dealt with backlogs of articles created by the shift, thanks mainly to enthusiastic support from members of the editorial advisory board and legions of colleagues all over the world. Alex Medcalf, my editorial assistant in York, is to be commended for his hard work and powers of organisation. And, the University of York has generously provided dedicated space for the editorial office. I am very grateful for such wide-ranging support. This seems to be an appropriate time for an important clarification. Medical History will continue to be fully archived on PubMed Central (PMC) and UK PubMed Central (UKPMC) upon publication. The content deposited there will be the final, published version of record, as soon as possible after publication, with no embargo. The existing content on PMC/UKPMC – covering the entire back-run of Medical History and the Supplement – will also remain available. Print copies of the journal will continue to be available to individual and institutional subscribers, as they have been previously. Subscribers also have the option to access content on the Cambridge Journals Online platform, which offers users search functionality, reference linking and the option to view content on e-readers and other mobile devices. Material included on PMC/UKPMC will remain the copyright of the author. From 2012 authors will also have the option to publish their work under a Creative Commons, Attribution-only (CC-BY) licence. Articles published under this licence will be available for download immediately upon publication on the Cambridge University Press site (journals.cambridge.org/mdh). Authors or their funding bodies will pay an article processing fee in order to publish their work in this way. All other authors will be able to publish their work under the traditional model of a regular transfer of copyright form. Subject to the growth in the number of authors (and research funders) willing to support the cost for CC-BY licensing, the aim is for Medical History to eventually move to a fully open access model and discontinue its subscription model. Thanks to the work of the Wellcome Trust and Cambridge University Press, the long-term future of the journal is secure.

Levetiracetam May Worsen Myoclonus in Patients With Juvenile Myoclonic Epilepsy

Levetiracetam was approved for generalized and partial epilepsy in pediatric and adult population. It is also an effective antimyoclonus, but the evidence only supports its use as an adjunctive agent along with other antiepileptic drugs, such as sodium valproate, and it is commonly used in cases with juvenile myoclonic epilepsy. We report here 2 cases with juvenile myoclonic epilepsy who were switched from sodium valproate to levetiracetam to avoid the cosmetic or future teratogenic effect, but this switch was associated with exaggerated myoclonus despite escalating the dose of levetiracetam but resolved completely after reintroducing sodium valproate.

A Pediatric Peripheral Intravenous Infiltration Assessment Tool

Infiltration is a common complication of intravenous (IV) therapy. The use of adequate tools for IV assessment can identify infiltration in its early stages, thus reducing the potential for more serious complications. Assessment of IV devices in children needs to be performed using age- and size-appropriate tools that take into account children's smaller size and particular characteristics. It is also important to consider the size of an infiltration in relation to the affected extremity. This article discusses the development of a pediatric IV assessment tool as well as its psychometric properties.

Methotrexate

Previously established as a chemotherapeutic agent for decades, methotrexate has been adapted for use as a medical therapy for unruptured ectopic pregnancies. Its mechanism of action, competitive inhibition of folate-dependent steps in nucleic acid synthesis, effectively kills the rapidly dividing ectopic trophoblast. However, the same action on normal cells is the basis for many of its adverse effects.

Serious adverse events after cataract surgery

Over the past several decades, there have been many advances in the equipment, instrumentation and techniques of performing cataract surgery. This review will address the impact of these advances on the safety profile of cataract surgery. Recent studies have demonstrated a decline in the risk of serious postoperative adverse events (endophthalmitis, suprachoroidal hemorrhage, retinal detachment) following cataract surgery. Factors that increase the risk of serious complications from cataract surgery include patient-related factors (male sex, concomitant diabetic retinopathy, same day cataract surgery combined with another intraocular surgery, tamsulosin use) and surgeon-related factors (low surgical volume, limited experience, operating on patients who are most prone to adverse events). Cataract surgery continues to be a very well tolerated surgical procedure with few patients experiencing serious sight-threatening adverse events. Studies in the literature have helped surgeons identify patients who are at high risk for surgical complications and develop strategies to limit surgical complications when operating on these patients. As multifocal intraocular lenses, femtosecond laser technology, and other surgical innovations continue to gain popularity, it will be interesting in the coming years to determine whether there will be a continued reduction in complications of cataract surgery.

Paroxysmal nocturnal hemoglobinuria

The aim is to report on recent observations related to the natural history of paroxysmal nocturnal hemoglobinuria (PNH) and to review new therapeutic strategies for controlling the hemolysis of PNH. This review focuses on studies designed to characterize the long-term outcome of patients with PNH treated with eculizumab and to define the relationship between PNH and bone marrow failure syndromes. New therapeutic strategies aimed at controlling extravascular as well as intravascular hemolysis are also examined. Long-term safety and efficacy of eculizumab was observed in a large group of patients. Survival for the group was not different from that of a sex-matched and age-matched control group from the general population. Thrombotic complications were rare and deaths due to PNH or complications of therapy were not observed. These studies suggest that patients with clinical PNH who are treated with eculizumab have a benign clinical course. Patients with bone marrow failure who have PNH cells detected by high-sensitivity flow cytometry have aplastic anemia or low-risk myelodysplastic syndrome. For patients with a percentage of PNH cells that is below the threshold for producing laboratory evidence of hemolysis (subclinical PNH), expansion of the clone to a size sufficient to produce clinical PNH is not observed. Approximately 50% of patients with bone marrow failure who have clinical evidence of PNH at presentation will require PNH-specific therapy. Novel reagents that target the alternative pathway of complement C3 convertase are being developed with a goal of inhibiting both the extravascular and the intravascular hemolysis of PNH.

Eating Disorders

This issue provides a clinical overview of eating disorders focusing on prevention, diagnosis, treatment, practice improvement, and patient information. Readers can complete the accompanying CME quiz for 1.5 credits. Only ACP members and individual subscribers can access the electronic features of In the Clinic. Non-subscribers who wish to access this issue of In the Clinic can elect "Pay for View." Subscribers can receive 1.5 category 1 CME credits by completing the CME quiz that accompanies this issue of In the Clinic. The content of In the Clinic is drawn from the clinical information and education resources of the American College of Physicians (ACP), including PIER (Physicians' Information and Education Resource) and MKSAP (Medical Knowledge and Self Assessment Program). Annals of Internal Medicine editors develop In the Clinic from these primary sources in collaboration with the ACP's Medical Education and Publishing division and with assistance of science writers and physician writers. Editorial consultants from PIER and MKSAP provide expert review of the content. Readers who are interested in these primary resources for more detail can consult www.acponline.org, http://pier.acponline.org, and other resources referenced within each issue of In the Clinic.

A Data Driven Exploration of Broadband Traffic Issues: Growth, Management, and Policy

This paper uses a novel dataset from multiple ISPs to characterize important trends in broadband traffic growth, develop a better understanding of usage-related costs, and consider the implications of this growth for both network operators (e.g. subscription plans and traffic management policies) and policy makers (e.g. interconnection policies and market structure). We begin by carefully considering the components of overall traffic growth. These include growth from additional users and devices attached to the network as well as growth from the changing behaviors of users and devices. Teasing apart these different types of growth is particularly important as markets for new subscribers saturate. Second we consider temporal properties of traffic at various time-scales which informs the tradeoffs inherent in alternative ways for defining peak traffic periods. These peak periods are important as they are primary drivers of network provisioning and service design decisions, and thus factor into cost estimation, investment planning, and policy analyses. Further, since no standard exists for defining “peak traffic periods,” the term is often employed overly causally in both technical and policy discussions. While a variety of definitions are all reasonable, understanding the differences is worthwhile. We next explore the connection between traffic, traffic during peak periods, and costs to the network providers of carrying traffic. We consider the economic, business, and policy tradeoffs for how these costs are shared. Central to this paper is a unique pool of data that a set of broadband access providers have shared with our research group. The data-set that informs this report is a large set of anonymous per-subscriber byte counts over different time intervals. Some data sets allow us to look at behavior at a 15 minute granularity. (The only per-subscriber information received was the equivalent of interface byte counters associated with anonymized subscriber identifiers so that we could track individual subscribers over multiple months. No personally identifiable information of any nature was received from providers.) This data allows us to ask and answer some key, and sometimes contentious questions, about traffic on broadband networks, such as: What is the distribution of usage across the subscriber population? What is the distribution of usage during peak periods across the subscriber population? What do daily traffic patterns look like? What is the long-term behavior of subscribers that occasionally appear in the tails of the usage distribution? How good are various heuristics (such as total traffic over a month) at approximating contributions to peak time periods? How much is per-subscriber traffic growing yearly? This rich data set provides more detailed insights than studies that are based only on long-term usage data or on aggregates of many users. Because we have per-subscriber traffic we can reconstruct the actual aggregate and peak traffic, whereas if all we had were the peak and aggregate traffic statistics (or worse only one or the other), we could only make inferences about per subscriber behavior that would depend on a number of strong simplifying assumptions. Our analysis of fat-tailed user behavior highlights just how misleading such inferences might be.