Quality of Life in Systemic Lupus Erythematosus

Systemic lupus erythematosus (SLE) is a pervasive disease with wide-ranging effects on physical, psychological and social well-being. As such, a comprehensive assessment of SLE should include several different outcomes, such as quality of life (QoL) and economic costs, in addition to measures of disease activity and damage. In fact, disease effects on QoL are often considered of greater overall importance to patients. Two approaches have been used in the measurement of QoL: generic questionnaires and disease-specific questionnaires. Generic questionnaires are designed to be used across various conditions and populations, whereas disease-specific questionnaires are designed to measure outcomes in one specific disease or condition. The most commonly used measure of QoL is the Medical Outcomes Study Short Form 36 (SF-36), which is a generic measure that is applicable in a variety of conditions, including SLE. Recently, SLE-specific measures have been developed that may prove to be more responsive than generic measures. The hope is that improved outcome measures will allow for better assessment of SLE and eventually facilitate drug development and improve patient care

The development and preliminary validation of a Preference-Based Stroke Index (PBSI)

BACKGROUND: Health-related quality of life (HRQL) is a key issue in disabling conditions like stroke. Unfortunately, HRQL is often difficult to quantify in a comprehensive measure that can be used in cost analyses. Preference-based HRQL measures meet this challenge. To date, there are no existing preference-based HRQL measure for stroke that could be used as an outcome in clinical and economic studies of stroke. The aim of this study was to develop the first stroke-specific health index, the Preference-based Stroke Index (PBSI). METHODS: The PBSI includes 10 items; walking, climbing stairs, physical activities/sports, recreational activities, work, driving, speech, memory, coping and self-esteem. Each item has a 3-point response scale. Items known to be impacted by a stroke were selected. Scaling properties and preference-weights obtained from individuals with stroke and their caregivers were used to develop a cumulative score. RESULTS: Compared to the EQ-5D, the PBSI showed no ceiling effect in a high-functioning stroke population. Moderately high correlations were found between the physical function (r = 0.78), vitality (r = 0.67), social functioning (r = 0.64) scales of the SF-36 and the PBSI. The lowest correlation was with the role emotional scale of the SF-36 (r = 0.32). Our results indicated that the PBSI can differentiate patients by severity of stroke (p < 0.05) and level of functional independence (p < 0.0001). CONCLUSIONS: Content validity and preliminary evidence of construct validity has been demonstrated. Further work is needed to develop a multiattribute utility function to gather information on psychometric properties of the PBSI

“Ne nnipadua mmpe” (the body hates it): Exploring the lived experience of food allergy in Sub-Saharan Africa

The final publication is available at Elsevier via https://dx.doi.org/10.1016/j.socscimed.2018.03.031 © 2018. This manuscript version is made available under the CC-BY-NC-ND 4.0 license https://creativecommons.org/licenses/by-nc-nd/4.0/Allergic diseases have closely followed the rise of non-communicable diseases (NCDs) especially in western societies. As prevalence of NCD is increasing in sub-Saharan Africa (SSA), researchers are hinting that the same future may hold for (food) allergic disease in this world region. Already, researchers are beginning to record prevalence, though with little attention to the social experience of individuals and parents with food allergic children. This paper presents the first qualitative analysis of the daily realities of adults and parents of children with allergies in SSA using Ghana as a case study. Drawing on political ecology of health, this study contextualizes the psychological (e.g. anxiety and fear), social (e.g. stigmatization, social exclusion), and economic (e.g. impact on work & household expenditures) wellbeing of affected persons within the broader sociocultural environment. By exploring the sociocultural environment, the results provide insights into the likely structures (e.g. the lack of familiarity, absence of local discursive repertoire on food allergy, infrastructure deficit) which interact to shape anxiety, and social exclusion of people with allergy. The case study provides evidence suggesting food allergies do have a global reach, and policy makers must heed the message to integrate food allergy into the broader chronic disease prevention agenda

PLTL in the Developmental Writing Classsroom

Writing placement exam preparation can be broken down into small tasks overseen by Peer Leaders, following (though not precisely) patterns set out by Fred Keller in “Good-bye Teacher” in 1968. The mechanical aspect of writing, however, is never enough for the production of essays that communicate, something that requires audience and a desire to “speak.” Students in developmental classrooms often have problems beyond the writing itself: they may be test shy and may not be prepared to take on even college entry tasks without careful direction. Working with Peer Leaders, the developmental program can address the problems of mechanics and testing demands, the Peer Leaders taking on some of the responsibility for guiding students through the tasks. PLTL can also help address the broader problems of preparation for college and even for critical thinking, the Peer Leaders serving as role models

Reconceptualizing Integrated Knowledge Translation goals: a case study on basic and clinical science investigating the causes and consequences of food allergy

Abstract Background Integrated Knowledge Translation (IKT) and other forms of research co-production are increasingly recognized as valuable approaches to knowledge creation as a way to better facilitate the implementation of scientific findings. However, the nature of some scientific work can preclude direct knowledge to action as a likely outcome. Do IKT approaches have value in such cases? Methods This study used a qualitative case study approach to better understand the function of IKT in a non-traditional application: basic and clinical science investigating the causes and consequences of food allergy. Building off previous baseline findings, data were obtained through in-depth interviews with project scientists and steering committee members and complemented by researcher observation. Data were analyzed through an integrated approach to understand how well participants perceived the stipulated project IKT outcomes had been met and to better understand the relationship between different forms of IKT goals, outcomes, and impacts. Results We propose a conceptual model which builds temporal continuity into the IKT work and understands success beyond truncated timelines of any one project. The model proposes project IKT goals be conceptualized through three metaphorical tower blocks: foundational (changing the culture for both scientists and knowledge-users), laying the groundwork (building relationships, networks and sparking scientific inquiry), and putting scientific knowledge to action. Based on this model, this case study demonstrated notable success at the foundational and intermediate blocks, though did not turn basic and clinical research knowledge into actionable outcomes within the project timespan. Conclusions We find that current IKT literature which situates success as filling a knowledge to action gap is conceptually inadequate for understanding the full contributions of IKT activities. This work highlights the need for building cultural and scientific familiarity with IKT in order to better enable knowledge to action translation. Improving understanding and communication of science and empowering knowledge-users to engage with the research agenda are long-term strategies to build towards knowledge implementation and lay the ground work for many future research projects

Recent trends in hormone therapy utilization and breast cancer incidence rates in the high incidence population of Marin County, California

<p>Abstract</p> <p>Background</p> <p>Recent declines in invasive breast cancer have been reported in the US, with many studies linking these declines to reductions in the use of combination estrogen/progestin hormone therapy (EPHT). We evaluated the changing use of postmenopausal hormone therapy, mammography screening rates, and the decline in breast cancer incidence specifically for Marin County, California, a population with historically elevated breast cancer incidence rates.</p> <p>Methods</p> <p>The Marin Women's Study (MWS) is a community-based, prospective cohort study launched in 2006 to monitor changes in breast cancer, breast density, and personal and biologic risk factors among women living in Marin County. The MWS enrolled 1,833 women following routine screening mammography between October 2006 and July 2007. Participants completed a self-administered questionnaire that included items regarding historical hormone therapy regimen (estrogen only, progesterone only, EPHT), age of first and last use, total years of use, and reason(s) for stopping, as well as information regarding complementary hormone use. Questionnaire items were analyzed for 1,083 non-Hispanic white participants ages 50 and over. Breast cancer incidence rates were assessed overall and by tumor histology and estrogen receptor (ER) status for the years 1990-2007 using data from the Northern California Surveillance, Epidemiology and End Results (SEER) cancer registry.</p> <p>Results</p> <p>Prevalence of EPHT use among non-Hispanic white women ages 50 and over declined sharply from 21.2% in 1998 to 6.7% by 2006-07. Estrogen only use declined from 26.9% in 1998 to 22.4% by 2006-07. Invasive breast cancer incidence rates declined 33.4% between 2001 and 2004, with drops most pronounced for ER+ cancers. These rate reductions corresponded to declines of about 50 cases per year, consistent with population attributable fraction estimates for EPHT-related breast cancer. Self-reported screening mammography rates did not change during this period. Use of alternative or complementary agents did not differ significantly between ever and never hormone users. Of women who reported stopping EPHT in the past 5 years, 60% cited "health risks" or "news reports" as their primary reasons for quitting.</p> <p>Conclusion</p> <p>A dramatic reduction in EPHT use was followed temporally by a significant reduction in invasive and ER+ breast cancer rates among women living in Marin County, California.</p

Genetic and environmental susceptibility to food allergy in a registry of twins

Non peer reviewe