Portuguese health care costs related to asbestos exposure: a cost-of-illness study on mesothelioma hospital admission in the period 2000-2015

Background: Portugal has a temperate climate and low industrialization levels existing in the period after World War II, when asbestos materials were used worldwide, has contributed to the generalized belief of low usage of those materials. - Such supposition lacks confirmation; - There is no specific registry of asbestos-related diseases, workers asbestos exposure or asbestos industrial use; - Mesotheliomas are rare neoplasms strongly related to asbestos exposure so they can be used to understand the possible dimension of past exposure to asbestos; - It was estimated that professional diseases under notification was up to 90% for asbestos-related diseases, mainly mesotheliomas.

Epidemiology and genetic architecture of blood pressure: a family based study of Generation Scotland

Hypertension is a major risk factor for cardiovascular disease and mortality, and a growing global public health concern, with up to one-third of the world’s population affected. Despite the vast amount of evidence for the benefits of blood pressure (BP) lowering accumulated to date, elevated BP is still the leading risk factor for disease and disability worldwide. It is well established that hypertension and BP are common complex traits, where multiple genetic and environmental factors contribute to BP variation. Furthermore, family and twin studies confirmed the genetic component of BP, with a heritability estimate in the range of 30-50%. Contemporary genomic tools enabling the genotyping of millions of genetic variants across the human genome in an efficient, reliable, and cost-effective manner, has transformed hypertension genetics research. This is accompanied by the presence of international consortia that have offered unprecedentedly large sample sizes for genome-wide association studies (GWASs). While GWAS for hypertension and BP have identified more than 60 loci, variants in these loci are associated with modest effects on BP and in aggregate can explain less than 3% of the variance in BP. The aims of this thesis are to study the genetic and environmental factors that influence BP and hypertension traits in the Scottish population, by performing several genetic epidemiological analyses. In the first part of this thesis, it aims to study the burden of hypertension in the Scottish population, along with assessing the familial aggregation and heritialbity of BP and hypertension traits. In the second part, it aims to validate the association of common SNPs reported in the large GWAS and to estimate the variance explained by these variants. In this thesis, comprehensive genetic epidemiology analyses were performed on Generation Scotland: Scottish Family Health Study (GS:SFHS), one of the largest population-based family design studies. The availability of clinical, biological samples, self-reported information, and medical records for study participants has allowed several assessments to be performed to evaluate factors that influence BP variation in the Scottish population. Of the 20,753 subjects genotyped in the study, a total of 18,470 individuals (grouped into 7,025 extended families) passed the stringent quality control (QC) criteria and were available for all subsequent analysis. Based on the BP-lowering treatment exposure sources, subjects were further classified into two groups. First, subjects with both a self-reported medications (SRMs) history and electronic-prescription records (EPRs; n =12,347); second, all the subjects with at least one medication history source (n =18,470). In the first group, the analysis showed a good concordance between SRMs and EPRs (kappa =71%), indicating that SRMs can be used as a surrogate to assess the exposure to BP-lowering medication in GS:SFHS participants. Although both sources suffer from some limitations, SRMs can be considered the best available source to estimate the drug exposure history in those without EPRs. The prevalence of hypertension was 40.8% with higher prevalence in men (46.3%) compared to women (35.8%). The prevalence of awareness, treatment and controlled hypertension as defined by the study definition were 25.3%, 31.2%, and 54.3%, respectively. These findings are lower than similar reported studies in other populations, with the exception of controlled hypertension prevalence, which can be considered better than other populations. Odds of hypertension were higher in men, obese or overweight individuals, people with a parental history of hypertension, and those living in the most deprived area of Scotland. On the other hand, deprivation was associated with higher odds of treatment, awareness and controlled hypertension, suggesting that people living in the most deprived area may have been receiving better quality of care, or have higher comorbidity levels requiring greater engagement with doctors. These findings highlight the need for further work to improve hypertension management in Scotland. The family design of GS:SFHS has allowed family-based analysis to be performed to assess the familial aggregation and heritability of BP and hypertension traits. The familial correlation of BP traits ranged from 0.07 to 0.20, and from 0.18 to 0.34 for parent-offspring pairs and sibling pairs, respectively. A higher correlation of BP traits was observed among first-degree relatives than other types of relative pairs. A variance-component model that was adjusted for sex, body mass index (BMI), age, and age-squared was used to estimate heritability of BP traits, which ranged from 24% to 32% with pulse pressure (PP) having the lowest estimates. The genetic correlation between BP traits showed a high correlation between systolic (SBP), diastolic (DBP) and mean arterial pressure (MAP) (G: 81% to 94%), but lower correlations with PP (G: 22% to 78%). The sibling recurrence risk ratio (λS) for hypertension and treatment were calculated as 1.60 and 2.04 respectively. These findings confirm the genetic components of BP traits in GS:SFHS, and justify further work to investigate genetic determinants of BP. Genetic variants reported in the recent large GWAS of BP traits were selected for genotyping in GS:SFHS using a custom designed TaqMan® OpenArray®. The genotyping plate included 44 single nucleotide polymorphisms (SNPs) that have been previously reported to be associated with BP or hypertension at genome-wide significance level. A linear mixed model that is adjusted for age, age-squared, sex, and BMI was used to test for the association between the genetic variants and BP traits. Of the 43 variants that passed the QC, 11 variants showed statistically significant association with at least one BP trait. The phenotypic variance explained by these variant for the four BP traits were 1.4%, 1.5%, 1.6%, and 0.8% for SBP, DBP, MAP, and PP, respectively. The association of genetic risk score (GRS) that were constructed from selected variants has showed a positive association with BP level and hypertension prevalence, with an average effect of one mmHg increase with each 0.80 unit increases in the GRS across the different BP traits. The impact of BP-lowering medication on the genetic association study for BP traits has been established, with typical practice of adding a fixed value (i.e. 15/10 mmHg) to the measured BP values to adjust for BP treatment. Using the subset of participants with the two treatment exposure sources (i.e. SRMs and EPRs), the influence of using either source to justify the addition of fixed values in SNP association signal was analysed. BP phenotypes derived from EPRs were considered the true phenotypes, and those derived from SRMs were considered less accurate, with some phenotypic noise. Comparing SNPs association signals between the four BP traits in the two model derived from the different adjustments showed that MAP was the least impacted by the phenotypic noise. This was suggested by identifying the same overlapped significant SNPs for the two models in the case of MAP, while other BP traits had some discrepancy between the two sources

Adaptive regulation or governmentality: patient safety and the changing regulation of medicine

Studies from across the world have shown that clinical mistakes are a major threat to the safety of patient care (World Health Organisation 2004). For the National Health Service (NHS) of England and Wales it is estimated that one in ten hospital patients experience some form of error, and each year these cost the service over £2billion in remedial care (Department of Health 2000). Unsurprisingly, ‘patient safety’ is now a major international health policy priority, questioning the efficacy of existing regulatory practices and proposing a new ethos of learning. Within England and Wales, the National Patient Safety Agency (NPSA) has been created to lead policy development and champion service-wide learning, whilst throughout the NHS the National Reporting and Learning System (NRLS) has been introduced to enable this learning (NPSA 2003). This paper investigates the extent to which, in seeking to better manage the threats to patient safety, this policy agenda represents a transition in medical regulation.

Social/economic costs and health-related quality of life in patients with epidermolysis bullosa in Europe

BACKGROUND: The aim of this study was to determine the social/economic costs and health-related quality of life (HRQOL) of patients with epidermolysis bullosa (EB) in eight EU member states. METHODS: We conducted a cross-sectional study of patients with EB from Bulgaria, France, Germany, Hungary, Italy, Spain, Sweden and the United Kingdom. Data on demographic characteristics, health resource utilisation, informal care, labour productivity losses, and HRQOL were collected from the questionnaires completed by patients or their caregivers. HRQOL was measured with the EuroQol 5-domain (EQ-5D) questionnaire. RESULTS: A total of 204 patients completed the questionnaire. Average annual costs varied from country to country, and ranged from euro9509 to euro49,233 (reference year 2012). Estimated direct healthcare costs ranged from euro419 to euro10,688; direct non-healthcare costs ranged from euro7449 to euro37,451 and labour productivity losses ranged from euro0 to euro7259. The average annual cost per patient across all countries was estimated at euro31,390, out of which euro5646 accounted for direct health costs (18.0 %), euro23,483 accounted for direct non-healthcare costs (74.8 %), and euro2261 accounted for indirect costs (7.2 %). Costs were shown to vary across patients with different disability but also between children and adults. The mean EQ-5D score for adult EB patients was estimated at between 0.49 and 0.71 and the mean EQ-5D visual analogue scale score was estimated at between 62 and 77. CONCLUSION: In addition to its negative impact on patient HRQOL, our study indicates the substantial social/economic burden of EB in Europe, attributable mostly to high direct non-healthcare costs.

Concepção de responsabilidade, solicitações na escolaridade dos filhos e envolvimento parental: Que relações?

Dissertação de Mestrado apresentada ao Instituto Superior de Psicologia Aplicada para obtenção de grau de Mestre na especialidade de Psicologia Educacional

Independence or Protection - does it have to be a choice? Reflections on the abuse people with learning disabilities in Cornwall

This commentary will use recent events in Cornwall to highlight the ongoing abuse of adults with learning disabilities in England. It will critically explore how two parallel policy agendas – namely, the promotion of choice and independence for adults with learning disabilities and the development of adult protection policies – have failed to connect, thus allowing abuse to continue to flourish. It will be argued that the abuse of people with learning disabilities can only be minimised by policies which reflect an understanding that choice and independence must necessarily be mediated by effective adult protection measures. Such protection needs to include not only an appropriate regulatory framework, access to justice and well-qualified staff, but also a more critical and reflective approach to the current orthodoxy which promotes choice and independence as the only acceptable goals for any person with a learning disability.

Chronic low back pain, chronic disability at work, chronic management issues.

International audience

Remédiation cognitive portant sur les aspects fluide et cristallisé de l’intelligence auprès d'adolescents présentant un fonctionnement intellectuel limite : approche par le jeu

L’objectif principal de cette thèse était de créer, d’implanter et d’évaluer l’efficacité d’un programme de remédiation cognitive, intervenant de façon comparable sur les aspects fluide (Gf) et cristallisé (Gc) de l’intelligence, au sein d’une population d’intérêt clinique, les adolescents présentant un fonctionnement intellectuel limite (FIL). Compte tenu de la forte prévalence de ce trouble, le programme de remédiation GAME (Gains et Apprentissages Multiples pour Enfant) s’est développé autour de jeux disponibles dans le commerce afin de faciliter l’accès et l’implantation de ce programme dans divers milieux. Le premier article de cette thèse, réalisé sous forme de revue systématique de la littérature, avait pour objectif de faire le point sur les études publiées utilisant le jeu comme outil de remédiation cognitive dans la population pédiatrique. L’efficacité, ainsi que la qualité du paradigme utilisé ont été évaluées, et des recommandations sur les aspects méthodologiques à respecter lors de ce type d’étude ont été proposées. Cet article a permis une meilleure compréhension des écueils à éviter et des points forts méthodologiques à intégrer lors de la création du programme de remédiation GAME. Certaines mises en garde méthodologiques relevées dans cet article ont permis d’améliorer la qualité du programme de remédiation cognitive développé dans ce projet de thèse. Compte tenu du peu d’études présentes dans la littérature scientifique concernant la population présentant un FIL (70ortant de clarifier les profils de cette population à laquelle s’adressait le programme GAME, notamment concernant son fonctionnement cognitif, adaptatif, comportemental et psychiatrique. La deuxième étude de cette thèse a donc permis de préciser le profil de cette population de manière empirique. Dans le domaine cognitif, une force a été mise en évidence au niveau langagier pour le vocabulaire réceptif et la fluence verbale. De plus, certains aspects des capacités attentionnelles et de la mémoire de travail semblaient être bien compensés, possiblement via l’effet de psychostimulants. Étonnamment, le fonctionnement adaptatif n’était pas directement relié au niveau intellectuel global et était hétérogène, suggérant l’importance d’évaluer ce domaine pour rendre compte du niveau de fonctionnement des adolescents présentant un FIL dans la vie quotidienne. D’un point de vue comportemental et psychiatrique, les adolescents avec un FIL avaient plus de manifestations internalisées et externalisées atteignant un seuil cliniquement significatif que leurs pairs. Ces manifestations comportementales expliquent d’ailleurs une part importante du niveau de stress parental dans cette population. Ces résultats sont importants à considérer lors de l’orientation académique, clinique et familiale dans la prise en charge des adolescents présentant un FIL, et soulignent l’importance de proposer une évaluation neuropsychologique approfondie. Enfin, la partie centrale de cette thèse consistait à créer un programme de remédiation cognitive portant sur les aspects fluide et cristallisé de l’intelligence, champs d’intervention qui a été négligé compte tenu de la stabilité longtemps postulée de ces processus. Ce programme de remédiation, intitulé GAME, s’adressait aux adolescents présentant un FIL pur ou partiel (soit les deux indices de raisonnement étaient dans la zone limite, soit un seul des deux), et présentait deux versants, GAME-c (portant sur l’intelligence cristallisée) et GAME-f (portant sur l’intelligence fluide). Cette intervention durait seize heures réparties sur huit semaines. Les résultats indiquent que les adolescents ayant suivi GAME-f ont amélioré leur raisonnement fluide; alors que les adolescents ayant suivi GAME-c ont amélioré à la fois leur raisonnement cristallisé et fluide. Cette étude contribue à remettre en question la stabilité des processus intellectuels. C’est par contre la première fois que des améliorations de l’intelligence sont constatées dans une population d’intérêt clinique par le biais d’un entraînement direct. Enfin, les variables cognitives, adaptatives, comportementales et psychiatriques susceptibles d’influencer la qualité de l’amélioration pour chacun des programmes GAME ont fait l’objet d’analyses supplémentaires dans un dernier chapitre et permettent de conclure à la possibilité d’adapter le programme GAME à d’autres populations (ex: déficience intellectuelle). Cette thèse a donc permis de souligner la pertinence d’utiliser les jeux comme outil de remédiation cognitive de part leur versatilité dans leur utilisation, leur facilité d’accès et leur faible coût. Elle met également en avant la nécessité de développer une meilleure compréhension de la population présentant un fonctionnement intellectuel limite et d’effectuer des évaluations neuropsychologiques exhaustives auprès de cette population (cognitif, adaptatif, comportemental et psychiatrique). Enfin, elle souligne la possibilité d’améliorer par remédiation directe les intelligences fluide et cristallisée auprès d’individus avec une intelligence subnormale et suggère qu’il pourrait en être de même pour des populations présentant des déficits cognitifs, comme la déficience intellectuelle légère. Les avenues futures de recherche et les retombées cliniques de ce travail sont discutées, en lien avec les différents résultats trouvés dans ces études.

Depression and physical disability in chronic pain: The mediation role of emotional intelligence and acceptance

Emotional intelligence (EI) and acceptance have previously been identified as potential factors in the adjustment to chronic pain (CP). This study examined the associations between CP experiences, depression, and physical disability. It further investigated the mediating effect of EI and acceptance in the relationship between CP experiences, depression, and physical disability and how this changes with the duration of the CP. Method: A cross-sectional design, employing validated questionnaires, was used to measure pain experience, physical disability, depression, EI, and acceptance in 133 CP patients. Results: All variables were found to be significantly associated in theoretically predicted ways. The relationship between CP experiences and depression was mediated by both factors, as high EI and acceptance promoted a decreased influence of pain on depression. By contrast, the relationship between CP experiences and physical disability was mediated by acceptance, but not by EI. Further, the temporal stability analysis of this mediation model showed that long-term CP patients are better able to make use of these factors. Conclusions: The relationship between the experience of pain and depression or physical disability seems to be significantly mediated by factors such as EI and acceptance. This study lends further support to the development of more encompassing models that take both control and non-control variables into account when conceptualising the adjustment to CP. Theoretical and clinical implications are discussed.

ABLE-BODIED WOMANHOOD: DISABILITY AND CORPOREALLY EXCLUSIONARY NARRATIVES IN BLACK AND WHITE WOMEN’S RIGHTS DISCOURSES, 1832-1932

This project is a feminist disability rhetorical analysis of US black and white women’s rights movements from 1832-1932. Guided by Disability and Feminist Theory, it works to identify the presence and use of patterns of disability tropes in women’s rights discourses. From Lucretia Coffin Mott to Sojourner Truth, Elizabeth Cady Stanton to Mary Church Terrell, and Charlotte Perkins Gilman to Addie Hunton, this project interrogates the rhetorical work of dominant narratives and lesser known voices in women’s rights discourses. I argue that early black and white women’s rights advocates often utilized and repeated a disability rhetoric that relied on disability metaphor, narrative prosthesis, and corporeally exclusionary narratives in order to construct definitions of womanhood. Their insistence on cognitive ability as a marker of “fitness” and “ability” provided the foundation for rights arguments based on ableist assumptions of autonomy and citizenship. I also argue that this use of disability rhetoric relied on and furthered a pervasive ableist ideology present not only in many of these movements, but in US society. In the process, US black and white women’s rights discourses have continually elided women with disabilities from women’s rights discourses because their bodies (physically, cognitively, and/or psychologically) did not meet the ableist prerequisites set for claiming women’s rights during this time period.

HIV Disclosure: Parental dilemma in informing HIV infected Children about their HIV Status in Malawi

Background Increasingly many perinatally HIV-infected children are surviving through adolescence and adulthood as a result of improvements in the management of paediatric HIV infection, particularly the increased use of combination therapy. It is usually the parents or guardians of these children who are faced with the task of informing the child living with HIV about his or her positive status. However, many parents—particularly biological parents —find this disclosure process difficult to initiate, and this study explored some of the difficulties that these parents encounter. Objective This study set out to explore potential factors that challenge parents and guardians when informing their perinatally HIV-infected child about the child’s HIV status. Design This was a qualitative narrative study that employed in-depth interviews with parents or guardians of children perinatally infected with HIV. A total of 20 parents and guardians of children who attend the outpatient HIV clinic at the Baylor College of Medicine-Abbott Fund Children’s Clinical Centre of Excellence (COE) in Lilongwe, Malawi were interviewed. Of these, 14 were biological parents and six were guardians. Results Guardians and parents expressed uneasiness and apprehension with the disclosure conversation, whether or not they had already told their child that he or she had HIV. Participants who had not told their children recounted that they had contemplated starting the conversation but could not gather enough courage to follow through with those thoughts. They cited the fear of robbing their child of the happiness of living without the knowledge of being positive, fear of making their own status known to more people, and fear of confrontation or creating enmity with their child as impediments to disclosing their child’s positive HIV status to him or her. Conclusions It is apparent that guardians—more particularly biological parents—of children perinatally infected by HIV find it difficult to inform their children about their children’s HIV status. From this disempowered position, parents dread the disclosure of a positive HIV status to a child as a psychosocial process that has the potential to disturb a family’s previously established equilibrium with threats of stigmatization, marginalization, and parent-child conflict. This calls for strategies that could support parents to make disclosure to the child less challenging.

Parental feelings face to hospitalization of the child

The hospitalizatíon of a child carnes with it major changes, etther in the child's life or parent. lllness and hospttalizatíon constitute a crisis situation for both the child and the famHy as it incorporates financiai, psychotogical, relational and social changes. The purpose of this work and analyze the satísfactíon and parents' perception on the importance of nursing care during hospttalizatíon and feelings experienced by parents. Objectives: To know the opinions and feelings of the parents in relation to the admlsston of the child 1n the service of Pediatrics at North of Portugal. Methods: Integrated this study parents of chtldren hospttalized in the pediatric inpatíent at the Hospital Trás-os-Montes e alto Douro, Vila Real, whose children were in the service to at least more than 48 hours, In total 33 escorts that replied to the questionnaire. For such a study we chose the type quantitative deschptíve. We proceeded to collect data by conductíng a questíonnaire, and the results of it were drafted in the SPSS program through Quantitatíve model wtth exploratory qualitatíve approach. Results: The age ofthe partícipants is between the 21 and 46 years - old, 75. 8% of respondents were married, 78. 8% of chtldren was hospitalized in the first time. We conclude that the mother is who else accompanies the chtld in the hospital. We had positive feedback regarding the interactíon parent-nurses since many parents stressed the good relatíonship with the nursing team (It reported that "Nurses" and "Nurses and "auxiliaries" were who else helped them, with 30. 3% and 21. 2% respectively). The feelings more mentioned were: anxiety -21 answers, sadness-20, fear-15 and hope with 15. The conditions offered to the parents were considered goodfor60.6%.

Tecendo vivências e sentidos do câncer infantil : família, doença e redes de apoio social em Natal-RN

This paper discusses the experiences related to the treatment of children´s cancer which had children, their mothers and families as their main characters. They were mainly originated from areas in the countryside and urban poor areas in the State of Rio Grande do Norte. The non-governmental organization Grupo de Apoio à Criança com Câncer (GACC) was the privileged ethnographic location. In this setting, the mother, which was called acompanhante (companion), and the children, defined as pacientes (patients), were often sheltered in reason of therapeutic practices and the treatment undertaken by children in a nearby hospital. This study aims to focus on the therapeutic itinerary, beyond the children´s suffering, dealing with the family as a whole, since the moral values from these popular families imply the complete involvement of the family in relation to the illness and its treatment. Therefore, it is experienced as a family problem. We also intend to understand the construction of meanings to the illness, dealing with the ideological continuity in the relationships between the families and the GACC. These meanings were built in the intersection of these two spheres, which refer particularly to medical, religious and emotional explanations. Ethnographic methods were applied in this research at the entity and another social contexts, such as the family households. I also tried to retrieve the process of treatment outside the GACC, visiting the family context, when doing dense interviews or just having conversations with informants. It was found that the GACC, as a non-governmental organization, generates a negotiation of identities, which develops, then, through the family as a whole, but also through the child and especially the mother, affecting, in some way, their internal organization. Furthermore, the meanings of the experience of illness appeared to be shaped by the family sphere as well as by the logic of public health structures

Effect on the disability index of adult patients with benign paroxysmal positional vertigo using vestibular rehabilitation and human movement

Objective: determine the effect on the disability index of adult patients with benign paroxysmal positional vertigo (BPPV) using vestibular rehabilitation therapy (VRT) and human movement. Subjects: six subjects with an average age of 49.5 ± 14.22 years who have been diagnosed with benign paroxysmal positional vertigo by an otolaryngologist. Instruments: the Dizziness Handicap Inventory and a questionnaire to determine impact on the quality of life of patients with this pathology (Ceballos and Vargas, 2004). Procedure: subjects underwent vestibular therapy for four weeks together with habituation and balance exercises in a semi-supervised manner. Two measurements were performed, one before and one after the vestibular therapy and researchers determined if there was any improvement in the physical, functional, and emotional dimensions. Statistical analysis: descriptive statistics and Student’s t-test of repeated measures were applied to analyze results obtained. Results: significant statistical differences were found in the physical dimension between the pre-test (19.33 ± 4.67 points) and post-test (13 ± 7.24 points) (t = 2.65; p < 0.05).  In contrast, no significant statistical differences were found in the functional (t = 2.44; p>0.05), emotional (t = 2.37; p>0.05) or general dimensions (t = 2.55; p>0.05). Conclusion: vestibular therapy with a semi-supervised human movement program improved the index of disability due to vertigo (physical dimension) in BPPV subjects.

Fadiga em pacientes da Coorte Brasília de artrite reumatoide (AR) : estudo da prevalência e comparação entre diferentes instrumentos de avaliação

Dissertação (mestrado)—Universidade de Brasília, Faculdade de Medicina, Programa de Pós-Graduação em Ciências Médicas, 2016.