Glucocorticoid therapy for adrenal insufficiency: nonadherence, concerns and dissatisfaction with information

Objective: Appropriate self‐management of glucocorticoid therapy (GC) is crucial for patients with adrenal insufficiency (AI). We aimed to describe patients’ self‐reported nonadherence to GC, evaluate perceived doubts about need for GC, concerns about adverse effects, and dissatisfaction with information received about GC. Design: Cross‐sectional survey. Patients: Patients prescribed GC for AI (n = 81) from five European countries. Measurements: Online survey including the Medication Adherence Report Scale (MARS), Beliefs about Medicines Questionnaire© (BMQ Specific, adapted for AI) and Satisfaction with Information about Medicines Scale© (Prof Rob Horne; SIMS). Results: Most patients (85·2%) reported a degree of nonadherence to GC. The most frequent types of nonadherence concerned changing the timing of GC doses, for example taking a dose later in the day than advised (37·0%). Few patients doubted their personal need for daily GC, but most reported high concerns about GC including potential weight gain (50·6%), osteoporosis (53·6%) and the continuing risk of adrenal crisis (50·6%). Dissatisfaction with information about GC was frequent, with participants particularly dissatisfied with the amount of information they had received about potential problems with GC. People who expressed dissatisfaction with information about GC, and concerns about its adverse effects were also more likely to report nonadherence (P < 0·05). Conclusions: Nonadherence to treatment, concerns about potential adverse effects and dissatisfaction with the information provided about treatment were frequently reported by this European sample of AI patients. Many AI patients may need additional information about their GC and support to address concerns about GC and facilitate adherence

An assessment of anxiety levels in dyslexic students in higher education

Background: It has long been hypothesized that children with learning disabilities, including dyslexia, may be highly vulnerable to emotional consequences such as anxiety. However, research has centred on school aged children. Aims: The present study aimed to clarify these findings with dyslexic students in higher education. Samples: 16 students with dyslexia were compared to 16 students with no history of learning difficulties. Methods: Students were asked to complete a verbal questionnaire concerning trait anxiety levels. They were then told that they would be given a timed reading test and their state anxiety levels were measured using the State‐Trait Anxiety Inventory (STAI; Spielberger, Gorsuch, & Lushene, 1983). Finally their reading was assessed using the Test of Word Reading Efficiency (Torgesen, Wagner & Rashotte, 1999). Results: Dyslexic students showed slower reading speeds than controls. They also had higher levels of state anxiety and elevated levels of academic and social, but not appearance anxiety. Conclusions: Dyslexic students in higher education show anxiety levels that are well above what is shown by students without learning difficulties. This anxiety is not limited to academic tasks but extends to many social situations. It is proposed that assessment of emotional well‐being should form part of the assessment of need for dyslexic students entering higher education

The concept of exposure to the risk of a road traffic accident and an overview of exposure data collection methods

Carroll's 1971 definition of exposure is expanded to simply "being in a situation which has some risk of involvement in a road traffic accident". After a brief discussion of the potential utility of exposure data for developing safety countermeasures, an overview of various exposure measures and data collection methods is presented. Finally some important questions regarding appropriate exposure data collection methods are listed along with the hope that more comparative research on exposure data collection methodology will be carried out in the near future.Peer Reviewedhttp://deepblue.lib.umich.edu/bitstream/2027.42/23854/1/0000093.pd

Challenges of Incorporating Digital Health Technology Outcomes in a Clinical Trial: Experiences from PD STAT.

Digital health technologies (DHTs) have great potential for use as clinical trial outcomes; however, practical issues need to be addressed in order to maximise their benefit. We describe our experience of incorporating two DHTs as secondary/exploratory outcome measures in PD STAT, a randomised clinical trial of simvastatin in people with Parkinson's disease. We found much higher rates of missing data in the DHTs than the traditional outcome measures, in particular due to technical and software difficulties. We discuss methods to address these obstacles in terms of protocol design, workforce training and data management

Enhancing Trial Delivery in Parkinson\u27s Disease: Qualitative Insights from PD STAT

\ua9 2022 - The authors. Published by IOS Press. Background: Recruitment and retention of participants in clinical trials for Parkinson\u27s disease (PD) is challenging. A qualitative study embedded in the PD STAT multi-centre randomised controlled trial of simvastatin for neuroprotection in PD explored the motivators, barriers and challenges of participants, care partners and research staff. Objective: To outline a set of considerations informing a patient-centred approach to trial recruitment, retention, and delivery. Method: We performed semi-structured interviews and focus groups with a subset of trial participants and their care partners. Quantitative and qualitative data were obtained through surveys circulated among the 235 participants across 23 UK sites at the beginning, middle and end of the 2-year trial. We also interviewed and surveyed research staff at trial closure. Results: Twenty-seven people with PD, 6 care partners and 9 researchers participated in interviews and focus groups. A total of 463 trial participant survey datasets were obtained across three timepoints, and 53 staff survey datasets at trial closure. Trial participants discussed the physical and psychological challenges they faced, especially in the context of OFF state assessments, relationships, and communication with research staff. Care partners shared their insights into OFF state challenges, and the value of being heard by research teams. Research staff echoed many concerns with suggestions on flexible, person-centred approaches to maximising convenience, comfort, and privacy. Conclusion: These considerations, in favour of person-centred research protocols informed by the variable needs of participants, care partners and staff, could be developed into a set of recommendations for future trials

Challenges of Incorporating Digital Health Technology Outcomes in a Clinical Trial: Experiences from PD STAT

\ua9 2022 - The authors. Published by IOS Press.Digital health technologies (DHTs) have great potential for use as clinical trial outcomes; however, practical issues need to be addressed in order to maximise their benefit. We describe our experience of incorporating two DHTs as secondary/exploratory outcome measures in PD STAT, a randomised clinical trial of simvastatin in people with Parkinson\u27s disease. We found much higher rates of missing data in the DHTs than the traditional outcome measures, in particular due to technical and software difficulties. We discuss methods to address these obstacles in terms of protocol design, workforce training and data management

Biomarkers of aging associated with past treatments in breast cancer survivors.

Radiation and chemotherapy are effective treatments for cancer, but are also toxic to healthy cells. Little is known about whether prior exposure to these treatments is related to markers of cellular aging years later in breast cancer survivors. We examined whether past exposure to chemotherapy and/or radiation treatment was associated with DNA damage, telomerase activity, and telomere length 3-6 years after completion of primary treatments in breast cancer survivors (stage 0-IIIA breast cancer at diagnosis). We also examined the relationship of these cellular aging markers with plasma levels of Interleukin (IL)-6, soluble TNF-receptor-II (sTNF-RII), and C-reactive protein (CRP). Ninety-four women (36.4-69.5 years; 80% white) were evaluated. Analyses adjusting for age, race, BMI, and years from last treatment found that women who had prior exposure to chemotherapy and/or radiation compared to women who had previously received surgery alone were more likely to have higher levels of DNA damage (P = .02) and lower telomerase activity (P = .02), but did not have differences in telomere length. More DNA damage and lower telomerase were each associated with higher levels of sTNF-RII (P's &lt; .05). We found that exposure to chemotherapy and/or radiation 3-6 years prior was associated with markers of cellular aging, including higher DNA damage and lower telomerase activity, in post-treatment breast cancer survivors. Furthermore, these measures were associated with elevated inflammatory activation, as indexed by sTNF-RII. Given that these differences were observed many years after the treatment, the findings suggest a long lasting effect of chemotherapy and/or radiation exposure

A Taxonomy of Disgust in Art

Disgust has been a perennial feature of art from medieval visions of hell to postmodern travesties. The purpose of this chapter is to chart various ways in which disgust functions in artworks both in terms of content and style, canvassing cases in which the content and/or style is literally disgusting in contrast to cases where the disgust serves to characterize the content, often for moral or political or broader cultural purposes

Extracting information from the text of electronic medical records to improve case detection: a systematic review

Background: Electronic medical records (EMRs) are revolutionizing health-related research. One key issue for study quality is the accurate identification of patients with the condition of interest. Information in EMRs can be entered as structured codes or unstructured free text. The majority of research studies have used only coded parts of EMRs for case-detection, which may bias findings, miss cases, and reduce study quality. This review examines whether incorporating information from text into case-detection algorithms can improve research quality. Methods: A systematic search returned 9659 papers, 67 of which reported on the extraction of information from free text of EMRs with the stated purpose of detecting cases of a named clinical condition. Methods for extracting information from text and the technical accuracy of case-detection algorithms were reviewed. Results: Studies mainly used US hospital-based EMRs, and extracted information from text for 41 conditions using keyword searches, rule-based algorithms, and machine learning methods. There was no clear difference in case-detection algorithm accuracy between rule-based and machine learning methods of extraction. Inclusion of information from text resulted in a significant improvement in algorithm sensitivity and area under the receiver operating characteristic in comparison to codes alone (median sensitivity 78% (codes + text) vs 62% (codes), P = .03; median area under the receiver operating characteristic 95% (codes + text) vs 88% (codes), P = .025). Conclusions: Text in EMRs is accessible, especially with open source information extraction algorithms, and significantly improves case detection when combined with codes. More harmonization of reporting within EMR studies is needed, particularly standardized reporting of algorithm accuracy metrics like positive predictive value (precision) and sensitivity (recall)

Regionalizing Government in Maine: Opportunities for the Future

In keeping with his promise to make government work better for the people of Maine, Governor Angus King commissioned the Task Force on Regional Options for Better Government. The Governor charged the task force with recommending some alternative regional arrangements for the delivery of government services currently provided by state or local government. The task force evaluated three services in which regionalism offered some advantages: economic development; demand response transportation; and municipal management information systems