It's all just suffering:the experience of pain in cystic fibrosis

Life expectancy in cystic fibrosis (CF) has greatly improved, but as people live longer, they experience increasing symptoms. Literature indicates pain in CF is common and underreported, affecting quality of life, mental health and adherence to treatment. Pain is best explored in the context of the whole person, yet previous studies are almost exclusively quantitative. The aim of this research was to gain understanding of the experience of pain, within the context of the whole person with CF. Within a social constructivist framework, narrative methodology focused on the complex and unique experiences of individuals. Data were gathered through interviews with nine individuals and analysed using a method of narrative analysis to present findings in stanzas, a poetic form that preserves the narrator’s voice. Findings were interpreted through the lens of total pain theory. Three key narratives contributed to understanding pain: emerging awareness, social legitimacy and invisibility. Emerging awareness was the gradually increasing understanding of what it means to have CF. Social legitimacy was critical in the experience of total pain, appearing as participants struggled to conform to societal expectations. Total pain was ever-present in these stories, and when participants were isolated or marginalised and lost social legitimacy, they felt invisible. Total pain and suffering in CF are best understood as a singular experience happening to a whole person, encapsulating their very being. This deeper understanding highlights an opportunity to explore pain in the context of the whole person, to inform clinical practice and future research

Detecting transient gravitational waves in non-Gaussian noise with partially redundant analysis methods

There is a broad class of astrophysical sources that produce detectable, transient, gravitational waves. Some searches for transient gravitational waves are tailored to known features of these sources. Other searches make few assumptions about the sources. Typically events are observable with multiple search techniques. This work describes how to combine the results of searches that are not independent, treating each search as a classifier for a given event. This will be shown to improve the overall sensitivity to gravitational-wave events while directly addressing the problem of consistent interpretation of multiple trials.Comment: 11 pages, 5 figure

Advance care planning in cystic fibrosis: Current practices, challenges, and opportunities

AbstractBackgroundStudies in cystic fibrosis (CF) report late attention to advance care planning (ACP). The purpose of this study was to examine ACP with patients receiving care at US adult CF care programs.MethodsChart abstraction was used to examine ACP with adults with CF dying from respiratory failure between 2011 and 2013.ResultsWe reviewed 210 deaths among 67 CF care programs. Median age at death was 29years (range 18–73). Median FEV1 in the year preceding death was 33% predicted (range 13–100%); 68% had severe lung disease with FEV1p=pp=0.55). The frequency of ACP varied significantly among the 29 programs contributing data from four or more deaths.ConclusionsACP in CF often occurs late in the disease course. Important decisions default to surrogates when opportunities for ACP are missed. Provision of ACP varies significantly among adult CF care programs. Careful evaluation of opportunities to enhance ACP and implementation of recommended approaches may lead to better practices in this important aspect of CF care

Likelihood-ratio ranking of gravitational-wave candidates in a non-Gaussian background

We describe a general approach to detection of transient gravitational-wave signals in the presence of non-Gaussian background noise. We prove that under quite general conditions, the ratio of the likelihood of observed data to contain a signal to the likelihood of it being a noise fluctuation provides optimal ranking for the candidate events found in an experiment. The likelihood-ratio ranking allows us to combine different kinds of data into a single analysis. We apply the general framework to the problem of unifying the results of independent experiments and the problem of accounting for non-Gaussian artifacts in the searches for gravitational waves from compact binary coalescence in LIGO data. We show analytically and confirm through simulations that in both cases the likelihood ratio statistic results in an improved analysis.Comment: 10 pages, 6 figure

Playthings in Early Modernity: Party Games, Word Games, Mind Games

Why do we play games—with and upon each other as well as ourselves? When are winners also losers, and vice-versa? How and to what end do we stretch the spaces of play? What happens when players go ‘out of bounds,’ or when games go ‘too far’? Moreover, what happens when we push the parameters of inquiry: when we play with traditional narratives of ludic culture, when we re-write the rules? An innovative volume of fifteen interdisciplinary essays at the nexus of material culture, performance studies, and game theory, Playthings in Early Modernity emphasizes the rules of the game(s) as well as the breaking of those rules. Thus, the titular ‘plaything’ is understood as both an object and a person, and play, in the early modern world, is treated not merely as a pastime, a leisurely pursuit, but as a pivotal part of daily life, a strategic psychosocial endeavor

International genome-wide meta-analysis identifies new primary biliary cirrhosis risk loci and targetable pathogenic pathways.

Primary biliary cirrhosis (PBC) is a classical autoimmune liver disease for which effective immunomodulatory therapy is lacking. Here we perform meta-analyses of discovery data sets from genome-wide association studies of European subjects (n=2,764 cases and 10,475 controls) followed by validation genotyping in an independent cohort (n=3,716 cases and 4,261 controls). We discover and validate six previously unknown risk loci for PBC (Pcombined<5 × 10(-8)) and used pathway analysis to identify JAK-STAT/IL12/IL27 signalling and cytokine-cytokine pathways, for which relevant therapies exist

Satisfaction and Effectiveness of Opioid Pain Management Among Adults with Cystic Fibrosis: A Mixed Methods Study

Background Chronic pain is common among people living with cystic fibrosis (CF) and associated with worse clinical outcomes. Despite this, little is known about how pain is managed and how opioids are used to treat pain. The purpose of this convergent mixed methods study was to examine self-reported satisfaction and effectiveness of pain management strategies among a sample of adults with CF who are prescribed opioids. Methods We developed an online survey querying 4 domains - demographics, pain characteristics, pain communication, and management strategies. This was distributed nationally to adults with CF (n=48) via various online platforms. We obtained quantitative and qualitative responses regarding satisfaction and effectiveness of pain management. Emerged themes from qualitative data were compared with responses from quantitative survey domains. Results Participants reported high levels of satisfaction and effectiveness with their opioid pain management plans. However, qualitative themes emerged regarding fears of addiction, experiences of feeling stigmatized by the healthcare system and ineffectiveness and inefficiency of alternative therapies for adequate pain relief. Conclusions Adults with CF reported opioids as an important component of their current pain management plans despite risks associated with opioid use. CF-specific pain management guideline development is warranted as is further research exploring pain development

Fish Bowl

Our idea was to try to bring the people of Fishtown together by hosting events that appeal to all ages. Nexus Maximus V The 2018 Challenge: Improving Lives Through Healthy Communities Teams will evaluate and seek innovation that supports the health and well-being of specific local community populations. The team’s project work will be supplemented with workshops on innovation, entrepreneurship, and content relevant to the theme, delivered by experts throughout the weekend. Teams will also explore opportunities to leverage that data in meaningful ways that benefit and protect individuals and society. The team project work will be supplemented with workshops on innovation, entrepreneurship, and content relevant to the theme, delivered by experts. Potential Areas of Exploration: Improving health care access Healthy community design New policies or business models to deliver sustainable value to the community Community diversityhttps://jdc.jefferson.edu/nexusmaximus/1034/thumbnail.jp

A propensity score matched analysis of obesity as an independent risk factor for postoperative complications in reduction mammaplasty

Aim: Reduction mammaplasty is a commonly performed procedure for the treatment of symptomatic macromastia and is increasingly desired by the obese population. With the increasing prevalence obesity in the population, it is imperative to understand its effect on postoperative outcomes. The purpose of this study is to evaluate obesity as an independent risk factor for postoperative complications in breast reduction surgery using 1:1 patient matching through propensity scores between obese patients and non-obese controls.Methods: Between 2005 and 2013, the National Surgical Quality Improvement Program dataset identified a total of 6,016 patients as having undergone primary reduction mammaplasty with 30-day postoperative follow-up. Patients were divided into obese [body mass index (BMI) of 30 or more] vs. not obese (BMI below 30). Patients were initially analyzed using standard multivariable analysis. Using propensity scores obtained from a logistic regression model, patients were subsequently matched 1:1 according to preoperative and operative variables to truly isolate the effect of obesity on surgical outcomes. Outcomes were compared between the matched cohorts using McNemar’s test and the Wilcoxon signed rank test.Results: In unmatched multivariable analysis, rates of overall complications (7.2% vs. 5.3%, P = 0.0024), wound complications (5.5% vs. 3.6%, P = 0.0004), superficial surgical site infection (4.1% vs. 2.8%, P = 0.0050), and wound dehiscence (0.3% vs. 1.1%, P = 0.0005) were found to be statistically different between obese vs. non-obese, respectively. However, when comparing 1:1 matched obese and non-obese patients, only wound complications (4.6% vs. 3.1%, P = 0.0334) were significantly increased in the obese cohort.Conclusion: Using the most robust statistical tools available, obesity was determined to affect wound complications after breast reduction without increased detriment on other major complications when compared to the non-obese. Obesity should be a considered with other preoperative comorbidities, rather than an independent contraindication to surgery. Breast reduction appears to be safe in the obese patient who is otherwise healthy