Experiences and concerns of patients with recurrent attacks of acute hepatic porphyria: A qualitative study

Background: The acute hepatic porphyrias (AHPs) are rare inborn errors of heme biosynthesis, characterized clinically by life-threatening acute neurovisceral attacks. Patients with recurrent attacks have a decreased quality of life (QoL); however, no interactive assessment of these patients' views has been reported. We conducted guided discussions regarding specific topics, to explore patients' disease experience and its impact on their lives. / Methods: Sixteen AHP patients experiencing acute attacks were recruited to moderator-led online focus groups. Five groups (3–4 patients each) were conducted and thematic analyses to identify, examine, and categorize patterns in the data was performed. / Results: All patients identified prodromal symptoms that began days prior to acute severe pain; the most common included confusion (“brain fog"), irritability, and fatigue. Patients avoided hospitalization due to prior poor experiences with physician knowledge of AHPs or their treatment. All patients used complementary and alternative medicine treatments to avoid hospitalization or manage chronic pain and 81% reported varying degrees of effectiveness. All patients indicated their disease impacted personal relationships due to feelings of isolation and difficulty adjusting to the disease's limitations. / Conclusion: Patients with recurrent attacks recognize prodromal warning symptoms, attempt to avoid hospitalization, turn to alternative treatments, and have markedly impaired QoL. Counseling and individualized support is crucial for AHP patients with recurrent attacks

The potential use of mapped extent and distribution of habitats as indicators of Good Environmental Status (GES)

The Healthy and Biologically Diverse Seas Evidence Group (HBDSEG) has been tasked with providing the technical advice for the implementation of the Marine Strategy Framework Directive (MSFD) with respect to descriptors linked to biodiversity. A workshop was held in London to address one of the Research and Development (R&D) proposals entitled: ‘Mapping the extent and distribution of habitats using acoustic and remote techniques, relevant to indicators for area/extent/habitat loss.’ The aim of the workshop was to identify, define and assess the feasibility of potential indicators of benthic habitat distribution and extent, and identify the R&D work which could be required to fully develop these indicators. The main points that came out of the workshop were: (i) There are many technical aspects of marine habitat mapping that still need to be resolved if cost-effective spatial indicators are to be developed. Many of the technical aspects that need addressing surround issues of consistency, confidence and repeatability. These areas should be tackled by the JNCC Habitat Mapping and Classification Working Group and the HBDSEG Seabed Mapping Working Group. (ii) There is a need for benthic ecologists (through the HBDSEG Benthic Habitats Subgroup and the JNCC Marine Indicators Group) to finalise the list of habitats for which extent and/or distribution indicators should be considered for development, building upon the recommendations from this report. When reviewing the list of indicators, benthic habitats could also be distinguished into those habitats that are defined/determined primarily by physical parameters (although including biological assemblages) (e.g. subtidal shallow sand) and those defined primarily by their biological assemblage (e.g. seagrass beds). This distinction is important as some anthropogenic pressures may influence the biological component of the ecosystem despite not having a quantifiable effect on the physical habitat distribution/extent. (iii) The scale and variety of UK benthic habitats makes any attempt to undertake comprehensive direct mapping exercises prohibitively expensive (especially where there is a need for repeat surveys for assessment). There is a clear need therefore to develop a risk-based approach that uses indirect indicators (e.g. modelling), such as habitats at risk from pressures caused by current human activities, to develop priorities for information gathering. The next steps that came out of the workshop were: (i) A combined approach should be developed by the JNCC Marine Indicators Group together with the HBDSEG Benthic Habitats Subgroup, which will compile and ultimately synthesise all the criteria used by the three different groups from the workshop. The agreed combined approach will be used to undertake a final review of the habitats considered during the workshop, and to evaluate any remaining habitats in order to produce a list of habitats for indicator development for which extent and/or distribution indicators could be appropriate. (ii) The points of advice raised at this workshop, alongside the combined approach aforementioned, and the final list of habitats for extent and/or distribution indicator development will be used to develop a prioritised list of actions to inform the next round of R&D proposals for benthic habitat indicator development in 2014. This will be done through technical discussions within JNCC and the relevant HBDSEG Subgroups. The preparation of recommendations by these groups should take into account existing work programmes, and consider the limited resources available to undertake any further R&D work

New Approaches to the Conceptualization and Measurement of Age and Ageing

People’s views on population ageing are influenced by the statistics that they read about it. The statistical measures in common use today were first developed around a century ago, in a very different demographic environment. For around two decades, we have been studying population ageing and have been arguing that its conventional portrayal is misleading. In this chapter, we summarize some of that research, which provides an alternative picture of population ageing, one that is more appropriate for twenty-first century. More details about our new view of population ageing can be found in. (Sanderson and Scherbov 2019). Population ageing can be measured in different ways. An example of this can found in the UN’s Profiles in Ageing, 2017. One way is to report on the forecasted increase in the number of people 60+ years old in the world

Promoting mental health in small-medium enterprises: An evaluation of the "Business in Mind" program

<p>Abstract</p> <p>Background</p> <p>Workplace mental health promotion (WMHP) aims to prevent and effectively manage the social and economic costs of common mental illnesses such as depression. The mental health of managers and employees within small-medium enterprises (SMEs) is a neglected sector in occupational health research and practice, despite the fact that this sector is the most common work setting in most economies. The availability and propensity of SME staff to attend face-to-face training/therapy or workshop style interventions often seen in corporate or public sector work settings is a widely recognised problem. The 'Business in Mind' program employs a DVD mode of delivery that is convenient for SME managers, particularly those operating in regional and remote areas where internet delivery may not be optimal. The objective of the intervention program is to improve the mental health of SME managers, and examine whether employees of managers' whose mental health improves, report positive change in their psychosocial work environment. The mechanisms via which we aim to improve managers' mental health are through the development of their psychological capital (a higher order construct comprised of hope, self efficacy, resilience and optimism) and their skills and capacities for coping with work stress.</p> <p>Methods/Design</p> <p>The effectiveness of two versions of the program (self administered and telephone facilitated) will be assessed using a randomised trial with an active control condition (psychoeducation only). We aim to recruit a minimum of 249 managers and a sample of their employees. This design allows for 83 managers per group, as power analyses showed that this number would allow for attrition of 20% and still enable detection of an effect size of 0.5. The intervention will be implemented over a three month period and postal surveys will assess managers and employees in each group at baseline, intervention completion, and at 6 month follow up. The intervention groups (managers only) will also be assessed at 12 and 24 month follow-up to examine maintenance of effects. Primary outcomes are managers' levels of psychological capital (hope, resilience, self-efficacy and optimism), coping strategies, anxiety and depression symptoms, self-reported health, job satisfaction and job tension. Secondary outcomes are participating managers subordinates' perceptions of manager support, relational justice, emotional climate and job tension. In order to provide an economic evaluation of the intervention, both employees and manager rates of absenteeism and presenteeism will also be assessed.</p> <p>Discussion</p> <p>The intervention being trialled is expected to improve both primary and secondary outcomes. If proven efficacious, the intervention could be disseminated to reach a much larger proportion of the business community.</p> <p>Trial registration</p> <p>Current controlled trials ISRCTN 62853520</p

Delayed diagnosis of oral squamous cell carcinoma: a case series

<p>Abstract</p> <p>Introduction</p> <p>In malign neoplasms, oral cancer is one of the important causes of mortality and morbidity. Squamous cell carcinoma is the most common form of oral cancers in adults and is related to risk factors such as smoking and alcohol consumption.</p> <p>Case presentation</p> <p>In this article, we present three case reports of oral squamous cell carcinomas with delayed diagnosis. The first patient was a 52-year-old Turkish man, the second patient was a 61-year-old Turkish man and the third patient was a 60-year-old Turkish woman. All were referred to the Ankara University Faculty of Dentistry with pain, swelling and various complaints in their jaws.</p> <p>Conclusion</p> <p>Early diagnosis is of vital importance for the prognosis of the patients with oral squamous cell carcinomas. For this reason, dentists play a crucial role in the early detection and prevention of oral cancers.</p

Adult height and risk of breast cancer: a possible effect of early nutrition

The relationship of breast cancer to early reproductive development and height suggests that fetal and childhood nutrition may be important in its aetiology. Caloric restriction sufficient to reduce adult height may reduce breast cancer risk. During World War II (WWII) there was a marked reduction in average caloric intake in Norway that resulted in greater nutritional diversity. We hypothesized that a positive association between height and risk of breast cancer would be stronger among women who were born during this period than among women born before or after the war. A total of 25 204 Norwegian women were followed up for approximately 11 years, and 215 incident cases of breast cancer were registered. We found the strongest positive association between height and breast cancer among women born during WWII: women in the tallest tertile (>167 cm) had a relative risk of 2.5 (95% confidence interval = 1.2–5.5) compared with the shortest (≤ 162 cm). Among women born before or after the war we found no clear association with height. The association with height in the WWII cohort may imply a role for early nutrition in breast cancer aetiology. © 2001 Cancer Research Campaignhttp://www.bjcancer.co

Rapid and Sensitive Detection of an Intracellular Pathogen in Human Peripheral Leukocytes with Hybridizing Magnetic Relaxation Nanosensors

Bacterial infections are still a major global healthcare problem. The quick and sensitive detection of pathogens responsible for these infections would facilitate correct diagnosis of the disease and expedite treatment. Of major importance are intracellular slow-growing pathogens that reside within peripheral leukocytes, evading recognition by the immune system and detection by traditional culture methods. Herein, we report the use of hybridizing magnetic nanosensors (hMRS) for the detection of an intracellular pathogen, Mycobacterium avium spp. paratuberculosis (MAP). The hMRS are designed to bind to a unique genomic sequence found in the MAP genome, causing significant changes in the sample’s magnetic resonance signal. Clinically relevant samples, including tissue and blood, were screened with hMRS and results were compared with traditional PCR analysis. Within less than an hour, the hMRS identified MAP-positive samples in a library of laboratory cultures, clinical isolates, blood and homogenized tissues. Comparison of the hMRS with culture methods in terms of prediction of disease state revealed that the hMRS outperformed established culture methods, while being significantly faster (1 hour vs 12 weeks). Additionally, using a single instrument and one nanoparticle preparation we were able to detect the intracellular bacterial target in clinical samples at the genomic and epitope levels. Overall, since the nanoparticles are robust in diverse environmental settings and substantially more affordable than PCR enzymes, the potential clinical and field-based use of hMRS in the multiplexed identification of microbial pathogens and other disease-related biomarkers via a single, deployable instrument in clinical and complex environmental samples is foreseen

Heparin and Heparan Sulfate: Analyzing Structure and Microheterogeneity [chapter]

available in PMC 2013 August 28The structural microheterogeneity of heparin and heparan sulfate is one of the major reasons for the multifunctionality exhibited by this class of molecules. In a physiological context, these molecules primarily exert their effects extracellularly by mediating key processes of cellular cross-talk and signaling leading to the modulation of a number of different biological activities including development, cell proliferation, and inflammation. This structural diversity is biosynthetically imprinted in a nontemplate-driven manner and may also be dynamically remodeled as cellular function changes. Understanding the structural information encoded in these molecules forms the basis for attempting to understand the complex biology they mediate. This chapter provides an overview of the origin of the structural microheterogeneity observed in heparin and heparan sulfate, and the orthogonal analytical methodologies that are required to help decipher this information