Adolescent-parent disagreement on health-related quality of life of food-allergic adolescents:who makes the difference?

Background: Food-allergic adolescents are at highest risk for food allergy fatalities, which may be partly due to compromised self-management behavior. Such behavior may be negatively influenced by conflictual situations caused by adolescent–parent disagreement on the adolescent’s health-related quality of life (HRQL). Comparisons of adolescent-self-reported and parent-proxy-reported HRQL of food-allergic adolescents have never extensively been studied. The aims of this study were to investigate disagreement in adolescent-self-reports and parent-proxy-reports on the HRQL of food-allergic adolescents and to investigate the factors influencing adolescent–parent disagreement. Methods: Teenager Form (TF) and Parent Form (PFA) of the Food Allergy Quality of Life Questionnaire (FAQLQ), Food Allergy Independent Measure (FAIM), and Brief-Illness Perception Questionnaire (Brief-IPQ) were sent to food-allergic Dutch adolescents (13–17 years) and their parents. ICCs, t-tests, and Bland–Altman plots were used to investigate adolescent–parent disagreement. Participant characteristics, illness expectations, and illness perceptions influencing adolescent–parent disagreement were studied using regression analysis. Results: Seventy adolescent–parent pairs were included. There were a moderate correlation (ICC = 0.61, P < 0.001) and no significant difference (3.78 vs 3.56, P = 0.103) between adolescent-self-reported and parent-proxy-reported HRQL at group level. However, Bland–Altman plots showed relevant differences (exceeding the minimal important difference) for 63% of all adolescent–parent pairs. Adolescent’s age (>15 years), poorer adolescent-reported illness comprehension (Brief-IPQ-TF, coherence), and higher adolescent-reported perceived disease severity (Food Allergy Independent Measure-Teenager Form & -Parent Form) were associated with adolescent–parent disagreement. Conclusions: Adolescent–parent disagreement on the adolescent’s HRQL was mainly associated with adolescents’ rather than parents’ perceptions and characteristics. Illness comprehension of the adolescent may be an important target for intervention aimed at reducing adolescent–parent disagreement.

The “FRA wheel” as a teaching tool to elaborate on the identity aspects of physics and mathematics as disciplines in interdisciplinary contexts

This thesis project is framed in the research field of Physics Education and aims to contribute to the reflection on the importance of disciplinary identities in addressing interdisciplinarity through the lens of the Nature of Science (NOS). In particular, the study focuses on the module on the parabola and parabolic motion, which was designed within the EU project IDENTITIES. The project aims to design modules to innovate pre-service teacher education according to contemporary challenges, focusing on interdisciplinarity in curricular and STEM topics (especially between physics, mathematics and computer science). The modules are designed according to a model of disciplines and interdisciplinarity that the project IDENTITIES has been elaborating on two main theoretical frameworks: the Family Resemblance Approach (FRA), reconceptualized for the Nature of science (Erduran & Dagher, 2014), and the boundary crossing and boundary objects framework by Akkerman and Bakker (2011). The main aim of the thesis is to explore the impact of this interdisciplinary model in the specific case of the implementation of the parabola and parabolic motion module in a context of preservice teacher education. To reach this purpose, we have analyzed some data collected during the implementation in order to investigate, in particular, the role of the FRA as a learning tool to: a) elaborate on the concept of “discipline”, within the broader problem to define interdisciplinarity; b) compare the epistemic core of physics and mathematics; c) develop epistemic skills and interdisciplinary competences in student-teachers. The analysis of the data led us to recognize three different roles played by the FRA: FRA as epistemological activator, FRA as scaffolding for reasoning and navigating (inhabiting) the complexity, and FRA as lens to investigate the relationship between physics and mathematics in the historical case.

Libres propos sur la législation OAPI relative aux obtentions végétales

Les innovations en matière variétale et de biotechnologie végétale sont présentées comme un moyen efficace et approprié susceptible de favoriser l'amélioration de la production alimentaire et des conditions de travail et de vie des agriculteurs ainsi que celles des collectivités coutumières dans les pays membres de l'Organisation africaine de la propriété intellectuelle (OAPI). Sur le plan juridique, il se pose le problème de la protection juridique de ces innovations ou obtentions végétales. Le législateur OAPI de 1977 n'avait pas envisagé de protection pour les obtentions végétales. À la différence de certains États industrialisés qui organisaient un régime de protection sui generis ou par le système des brevets, il n'évoquait les variétés végétales et les procédés d'obtention des végétaux que pour les exclure du domaine brevetable. L'accord sur les aspects des droits de propriété intellectuelle qui touchent au commerce (ADPIC) de l'organisation mondiale du commerce (OMC) est venu modifier la donne en imposant que les obtentions végétales puissent être protégées par les brevets, par un système sui generis ou par une combinaison des deux moyens. Le législateur OAPI de 1999 a voulu intégrer ces nouvelles exigences internationales en révisant l'Accord de Bangui. Ce faisant, l'exclusion de la brevetabilité des variétés végétales a été maintenue. Il ne restait plus au législateur qu'une seule option, l'adoption d'un régime de protection sui generis. Son choix s'est matérialisé par l'adoption de l'annexe X de l'Accord de Bangui de 1999 consacrée à « la protection des obtentions végétales ». Cette annexe est calquée sur la version de 1991 de la Convention Internationale pour la protection des obtentions végétales, mise en place par les pays européens. Il s'agit là d'un choix discutable. En effet, l'annexe X introduit dans l'espace OAPI une législation désincarnée, parce que à la fois incomplète et inadaptée à l'environnement socio-économique des pays membres de l'OAPI.

Patentes e licenciamentos compulsórios de medicamentos: o marco regulatório internacional e a ação dos países em desenvolvimento

Coordenação de Aperfeiçoamento de Pessoal de Nível Superior (CAPES)

What TRIPS is and what is is not

For industry people, journalists, activists, lawyers, diplomats, national legislators, and students of the World Trade Organization's Agreement on Trade-related Aspects of Intellectual Property (TRIPS) has awesome proportions. These are magnified by the fact that these groups lack detailed knowledge of either IP as such or international trade law. IP involves a broad spread of academic specialists and practitioners covering heterogeneous complex regimes of patents, copyright, trade marks, design, undisclosed information (trade secrets), and geographical indications. IP, and subsequently TRIPS, is the meeting point of many stakeholders and actors with conflicting interests spread between market aspirations and concepts of public good. In a globalized economy with deep interconnections across sectors, national borders challenged by inchoate technologies, dynamic social stakeholders, and converging technologies, it is fundamental to have a clear and uncluttered understanding of this Agreement. That is because TRIPS impinges on trade in many products of daily life, from pharmaceuticals to entertainment electronics, as well as mitigating and adaptive technologies for climate change and sustainable development. Given its saliency and ubiquity in economic life, TRIPS has often generated misunderstanding and controversy in the public debate. To complicate matters, technical and legal issues at the interface of technology, IP, and trade remain the province of an eclectic band of specialists and on the radar of interest groups with goals on opposite poles.

Predictors of readmission and health related quality of life in patients with chronic heart failure: a comparison of different psychosocial aspects

Psychological distress is common in patients with chronic heart failure. The impact of different psychological variables on prognosis has been shown but the comparative effects of these variables remain unclear. This study examines the impact of depression, anxiety, vital exhaustion, Type D personality, and social support on prognosis in chronic heart failure patients. One hundred eleven patients (mean age 57 ± 14 years) having participated in an exercise based ambulatory cardiac rehabilitation program were enrolled in a prospective cohort study. Psychological baseline data were assessed at program entry. Mortality, readmission, and health-related quality of life were assessed at follow up (mean 2.8 ± 1.1 years). After controlling for disease severity none of the psychological variables were associated with mortality, though severe anxiety predicted readmission [HR = 3.21 (95% CI, 1.04-9.93; P = .042)]. Health-related quality of life was independently explained by vital exhaustion, anxiety and either body mass index (physical dimension) or sex (emotional dimension). As psychological variables have a strong impact on health-related quality of life they should be routinely assessed in chronic heart failure patients` treatment.

A pre-post test evaluation of the impact of the PELICAN MDT-TME development programme on the working lives of colorectal cancer team members

Background - The PELICAN Multidisciplinary Team Total Mesorectal Excision (MDT-TME) Development Programme aimed to improve clinical outcomes for rectal cancer by educating colorectal cancer teams in precision surgery and related aspects of multidisciplinary care. The Programme reached almost all colorectal cancer teams across England. We took the opportunity to assess the impact of participating in this novel team-based Development Programme on the working lives of colorectal cancer team members. Methods - The impact of participating in the programme on team members' self-reported job stress, job satisfaction and team performance was assessed in a pre-post course study. 333/568 (59%) team members, from the 75 multidisciplinary teams who attended the final year of the Programme, completed questionnaires pre-course, and 6-8 weeks post-course. Results - Across all team members, the main sources of job satisfaction related to working in multidisciplinary teams; whilst feeling overloaded was the main source of job stress. Surgeons and clinical nurse specialists reported higher levels of job satisfaction than team members who do not provide direct patient care, whilst MDT coordinators reported the lowest levels of job satisfaction and job stress. Both job stress and satisfaction decreased after participating in the Programme for all team members. There was a small improvement in team performance. Conclusions - Participation in the Development Programme had a mixed impact on the working lives of team members in the immediate aftermath of attending. The decrease in team members' job stress may reflect the improved knowledge and skills conferred by the Programme. The decrease in job satisfaction may be the consequence of being unable to apply these skills immediately in clinical practice because of a lack of required infrastructure and/or equipment. In addition, whilst the Programme raised awareness of the challenges of teamworking, a greater focus on tackling these issues may have improved working lives further.

Discovery Of A Rare Pterosaur Bone Bed In A Cretaceous Desert With Insights On Ontogeny And Behavior Of Flying Reptiles.

A pterosaur bone bed with at least 47 individuals (wing spans: 0.65-2.35 m) of a new species is reported from southern Brazil from an interdunal lake deposit of a Cretaceous desert, shedding new light on several biological aspects of those flying reptiles. The material represents a new pterosaur, Caiuajara dobruskii gen. et sp. nov., that is the southermost occurrence of the edentulous clade Tapejaridae (Tapejarinae, Pterodactyloidea) recovered so far. Caiuajara dobruskii differs from all other members of this clade in several cranial features, including the presence of a ventral sagittal bony expansion projected inside the nasoantorbital fenestra, which is formed by the premaxillae; and features of the lower jaw, like a marked rounded depression in the occlusal concavity of the dentary. Ontogenetic variation of Caiuajara dobruskii is mainly reflected in the size and inclination of the premaxillary crest, changing from small and inclined (∼ 115°) in juveniles to large and steep (∼ 90°) in adults. No particular ontogenetic features are observed in postcranial elements. The available information suggests that this species was gregarious, living in colonies, and most likely precocial, being able to fly at a very young age, which might have been a general trend for at least derived pterosaurs.

Health-related quality of life among patients with advanced cancer: an integrative review

This integrative literature review aimed to characterize scientific articles on health-related quality of life – HRQoL – among patients with advanced cancer from national and international literature, and summarize those factors evidenced in the literature that contributed to the improvement or worsening of HRQoL among patients with advanced cancer. The search for materials was conducted in the following databases: CINAHL, EMBASE, PubMed, SciELO and LILACS. Among the 21 articles in the sample, 13 showed an improvement of HRQoL among patients with advanced cancer related to the development of physical, emotional and spiritual interventions. In eight studies, we identified predictive symptoms of low HRQoL, such as pain, fatigue, sleep disorders, depression, nutritional changes, and others. The results showed that clinical manifestations, which many times were inherent in cancer, such as factors that can lower patients’ HRQoL, while physical, psychological and spiritual benefits resulting from therapeutic interventions may promote its improvement.


Biological aspects of Leucothyreus ambrosius Blanchard (Coleoptera, Melolonthidae, Rutelinae)

Biological aspects of Leucothyreus ambrosius Blanchard (Coleoptera, Melolonthidae, Rutelinae). Coleopterans of the family Melolonthidae comprise a large group of species that feed on different food sources, including plant roots, stems, and leaves, in addition to plant materials at different decomposition stages. Several species are found in the genus Leucothyreus, occurring in different regions of Brazil, including the various biomes in the country. Information on the biology of species of the genus Leucothyreus is scarce, therefore, we conducted studies on the biological aspects of Leucothyreus ambrosius Blanchard, 1850. The period of adult occurrence was determined with a light trap installed between a cropped and pasture area in the municipality of Aquidauana, Mato Grosso do Sul State, Brazil. Adults collected in the field were used to form insect pairs and the studies were initiated in the entomology laboratory as the adults began ovipositing. Adults were observed flying in the field from October to December. Eggs were obtained as pairs were formed and a colony was established, the embryonic period lasting 14.6 days on average. The larval period in the 1st instar lasted 21.6 days, in the 2nd instar 19.6 days, and in the 3rd instar, 85.6 days. The head capsule width was 1.48 mm in the 1st instar, 2.44 mm in the 2nd, and 3.83 mm in 3rd larval instar. The pupal stage had an average duration of 35.5 days. The egg to adult period lasted 173.3 days. Morphometric information for the larval and adult stages is presented in this study.

Health-related quality of life in survivors of childhood cancer: the role of chronic health problems.

INTRODUCTION: The influence of specific health problems on health-related quality of life (HRQoL) in childhood cancer survivors is unknown. We compared HRQoL between survivors of childhood cancer and their siblings, determined factors associated with HRQoL, and investigated the influence of chronic health problems on HRQoL. METHODS: Within the Swiss Childhood Cancer Survivor Study, we sent a questionnaire to all survivors (≥16 years) registered in the Swiss Childhood Cancer Registry, who survived >5 years and were diagnosed 1976-2005 aged <16 years. Siblings received similar questionnaires. We assessed HRQoL using Short Form-36 (SF-36). Health problems from a standard questionnaire were classified into overweight, vision impairment, hearing, memory, digestive, musculoskeletal or neurological, and thyroid problems. RESULTS: The sample included 1,593 survivors and 695 siblings. Survivors scored significantly lower than siblings in physical function, role limitation, general health, and the Physical Component Summary (PCS). Lower score in PCS was associated with a diagnosis of central nervous system tumor, retinoblastoma or bone tumor, having had surgery, cranio-spinal irradiation, or bone marrow transplantation. Lower score in Mental Component Summary was associated with older age. All health problems decreased HRQoL in all scales. Most affected were survivors reporting memory problems and musculoskeletal or neurological problems. Health problems had the biggest impact on physical functioning, general health, and energy and vitality. CONCLUSIONS: In this study, we showed the negative impact of specific chronic health problems on survivors' HRQoL. IMPLICATIONS FOR CANCER SURVIVORS: Therapeutic preventive measures, risk-targeted follow-up, and interventions might help decrease health problems and, consequently, improve survivors' quality of life.

Physical activity level and health-related quality of life in the general adult population: a systematic review.

OBJECTIVE: Little is known regarding health-related quality of life and its relation with physical activity level in the general population. Our primary objective was to systematically review data examining this relationship. METHODS: We systematically searched MEDLINE, EMBASE, CINAHL, and PsycINFO for health-related quality of life and physical activity related keywords in titles, abstracts, or indexing fields. RESULTS: From 1426 retrieved references, 55 citations were judged to require further evaluation. Fourteen studies were retained for data extraction and analysis; seven were cross-sectional studies, two were cohort studies, four were randomized controlled trials and one used a combined cross sectional and longitudinal design. Thirteen different methods of physical activity assessment were used. Most health-related quality of life instruments related to the Medical Outcome Study SF-36 questionnaire. Cross-sectional studies showed a consistently positive association between self-reported physical activity and health-related quality of life. The largest cross-sectional study reported an adjusted odds ratio of "having 14 or more unhealthy days" during the previous month to be 0.40 (95% Confidence Interval 0.36-0.45) for those meeting recommended levels of physical activity compared to inactive subjects. Cohort studies and randomized controlled trials tended to show a positive effect of physical activity on health-related quality of life, but similar to the cross-sectional studies, had methodological limitations. CONCLUSION: Cross-sectional data showed a consistently positive association between physical activity level and health-related quality of life. Limited evidence from randomized controlled trials and cohort studies precludes a definitive statement about the nature of this association.

Glioblastoma in elderly patients: health-related quality of life (hrqol) in a randomized trial comparing 6-weeks of tadiotherapy (rt) vs hypofractionated rt over 2 weeks vs temozolomide chemotherapy (tmz)

BACKGROUND: Despite advances in treatment, survival of patients with GBM over 60 years is still often less than 1 year. In the perspective of a short expected survival, the quality of the remaining life and the effects of therapy on health-related quality of life (HRQoL) should be given special emphasis when recommending treatment for the individual patients. Several studies have focused on survival of the elderly, but few data are available on HRQoL for different treatments. In a randomized trial, we compared survival and HRQoL for 3 treatment options, 6 weeks of RT, vs hypofractionated RT, or chemotherapy with TMZ. MATERIALS AND METHODS: Newly diagnosed GBM patients, age ≥60 years with PS 0-2, were randomized to either standard RT (60 Gy in 2-Gy fractions over 6 weeks), hypofractionated RT (34 Gy in 3.4-Gy fractions over 2 weeks), or 6 cycles of chemotherapy with TMZ (200 mg/m2 day 1-5 every 28 days). QoL was determined by the EORTC QLQ 30 questionnaire and the Brain Cancer Module at inclusion, before start of therapy, at 6 weeks, 3 months, and 6 months after start of treatment. Patients were followed until death. The primary study endpoint was overall survival (OS) and secondary objectives were HRQoL, neurologic symptom control, and safety. RESULTS: A total of 342 patients were included and 292 patients were randomized between the 3 treatment options and 50 patients between hypofractionated RT and TMZ. Median age was 70 years (range 60-92) with 58% being male. Performance status was 0-1 for 75% of patients and 73% had undergone surgical resection. CONCLUSION: The results from the HRQoL analysis of this trial will be presented together with survival data at the upcoming EANO meeting.