Thesis (M.S.)--University of Michigan, 1981.

Les données de la littérature concernant les difficultés cognitives et comportementales dans la Neurofibromatose de type 1 (NF1) sont nombreuses avec des résultats parfois contradictoires. Après une revue de la littérature, ce travail de recherche : (i) décrit les difficultés comportementales, cognitives et motrices chez 78 patients atteints de NF1, âgés de 5 à 18 ans, au moyen de questionnaires aux parents (qualité de vie, impact de la maladie, difficultés des parents eux-mêmes, Conners, BRIEF, CBCL), et d'une évaluation de l'efficience intellectuelle et neuropsychologique détaillée ; (ii) analyse les relations entre les aspects cliniques, comportementaux, neuropsychologiques et l'imagerie (présence ou non d'« Objets Brillants Non Identifiés » caractéristiques de la NF1). Les difficultés d'apprentissage, malgré une qualité de vie plutôt bonne et un faible impact de la maladie, les troubles attentionnels et l'anxiété de l'enfant constituaient les principales sources d'inquiétude des parents. Les questionnaires étaient corrélés entre eux, mais ils étaient peu liés aux tests neuropsychologiques. La présence de difficultés cognitives spécifiques, en particulier visuo-spatiales et en motricité fine, a été confirmée. Aucune relation n'a pu être établie entre la neuropsychologie et l'imagerie. Les difficultés neuropsychologiques étaient plus sévères dans les formes familiales que sporadiques. / Cognitive and behavioral difficulties are common in children with Neurofibromatosis type 1 (NF1), however findings concerning the specific neuropsychological and behavioral profile as well as the association of these difficulties with clinical manifestations and brain imagery abnormalities are often contradictory. After a literature review, the present study: (i) describes behavioral, cognitive, and motor difficulties in 78 patients with NF1, aged 5 to 18 years, using parental questionnaires (quality of life, impact of illness, parental difficulties, Conners, BRIEF, CBCL), and tests of intellectual efficiency and specific neuropsychological functions; (ii) examines the relationships between clinical, behavioral, neuropsychological and imaging findings (presence or absence of "Unidentified Bright Objects" UBOs, characteristic feature of NF1). Learning disabilities, despite relatively good report of quality of life, attention disorders and child anxiety were the main parental concerns. All parental questionnaires were strongly inter-correlated, and associated with an overall positive or negative parental attitude during the interview with the psychologist. Parental concerns were only weakly related to neuropsychological tests. The presence of specific cognitive difficulties, particularly in visuospatial and fine motor skills, was confirmed. Imaging data were not associated with neuropsychological scores. Cognitive difficulties were more important in familial than sporadic forms.

O transplante de fígado é definido como a terapêutica de escolha para as doenças hepáticas em estágio terminal. Por muitos anos, o sucesso deste procedimento foi mensurado pelas taxas de mortalidade e a freqüência de complicações nas anastomoses biliares e complicações infecciosas. No entanto, mais recentemente um novo foco de preocupação voltou-se para a avaliação da qualidade de vida no grupo de pacientes transplantados. Os benefícios do transplante hepático sobre a qualidade de vida dos pacientes é um evento já demonstrado previamente em alguns estudos que utilizaram questionários genéricos de avaliação de qualidade de vida. A qualidade de vida em saúde também pode ser acessada através de questionários específicos, como o LDQOL (Liver Disease Quality of Life). Este é um instrumento voltado especificamente para sintomas relacionados às doenças hepáticas, desenvolvido nos Estados Unidos e recentemente traduzido para o Português e adaptado culturalmente para à população brasileira. Objetivo Aplicar este novo instrumento na população de pacientes em lista de espera de transplante de fígado e naqueles submetidos a transplante, reavaliando diferentes aspectos da qualidade de vida destes pacientes e avaliando o impacto da recidiva da doença de base após o transplante hepático. Método: Foram aplicados os questionários LDQOL e SF?36 a 126 pacientes em acompanhamento ambulatorial regular no Serviço de Transplante e Cirurgia do Fígado do Hospital das Clínicas da Universidade de São Paulo, dos quais 65 eram pacientes cirróticos em lista de espera de transplante de fígado e 61 deles eram pacientes submetidos a transplante hepático há pelo menos 6 meses e no máximo há 60 meses. Também foi aplicado o questionário SF-36 a um grupo de doadores de sangue sadios, pareados por sexo e idade e que funcionou como grupo controle. As avaliações, realizadas a partir da formação destes 3 grupos, incluiram a comparação da qualidade de vida entre cirróticos e transplantados, a comparação entre indivíduos saudáveis e portadores de hepatopatia e a influência de outros aspectos como etiologia da doença hepática, escore do MELD, classificação de Child-Pugh, presença de co-morbidades, tempo decorrido do transplante e efeito da recidiva da doença hepática sobre a qualidade de vida do paciente transplantado. O método estatístico aplicado foi o teste de Mann- Whitney. Resultados: As pontuações atingidas para os pacientes em lista de transplante hepático para mensuração da qualidade de vida foram significantemente mais baixas do que aquelas atingidas pelo grupo controle. Na comparação entre cirróticos com MELD <= 15 e cirróticos com MELD > 15, tanto o SF-36 como o LDQOL mostraram pior qualidade de vida nos pacientes com MELD mais elevado. A comparação entre indivíduos antes e depois do transplante evidenciou melhor qualidade de vida no grupo de pacientes transplantados. Isto ficou evidenciado tanto pelo LDQOL como SF-36. No grupo de pacientes pré-transplante, o questionário LDQOL mostrou maior comprometimento da qualidade de vida naqueles pacientes com cirrose por VHC, quando comparado a outras etiologias, enquanto o SF-36 não teve a mesma acurácia em demonstrar esta diferença. Nos pacientes transplantados, a recidiva da hepatite C determina comprometimento da qualidade de vida, quando avaliados pelo LDQOL, mas não pelo SF-36. Conclusões: O uso de um instrumento de medida de qualidade de vida - o LDQOL - pôde demonstrar, com maior acurácia, o seu comprometimento nos pacientes cirróticos, a melhora observada nos pacientes transplantados e o impacto negativo da recidiva da hepatite C no pós-transplante. / Liver transplantation has been established as the standard treatment for patients with end stage liver disease and for many years the outcomes of its procedure has been measured as mortality rates and biliary and infectious complications. More recently a new issue has been raised and many studies have been changing the focus to analyze the health related quality of life among the population of transplanted patients. A positive effect of liver transplantation on health-related quality of life (HRQOL) has been documented in many studies using generic instruments. Health-related quality of life can also be assessed with specific instruments, as the Liver Disease Quality of Life(LDQOL), a questionnaire targeted to symptoms of hepatic disease, that has been recently translated to Portuguese and culturally adapted to Brazilian population. Our aim was to reevaluate different aspects of HRQOL before and after liver transplantation with this new instrument, and determinate the impact of liver disease recurrence after the surgical procedure. Methods: The LDQOL and SF-36 questionnaires were applied to 126 patients at the Service of Transplant and Liver Surgery of Clinical Hospital of University of São Paulo, 65 of them on the transplant waiting list and 61 of them after 6 to 60 months of liver transplantation. It was also analyzed the quality of life, by using the SF-36 questionnaire, of health blood donors, paired by sex and age, to serve as control group. Multiple comparisons were made concerning etiology of cirrhosis, co-morbidities, MELD scores, time elapsed of transplant, recurrence of liver disease after liver transplantation, using the Mann-Whitney test. Results: HRQOL scores for patients waiting for transplantation were significantly lower than those for the control group. Patients with MELD scores > 15 showed worse healthrelated quality of life than patients with MELD scores <= 15, both with SF-36 and LDQOL. When the group of transplanted patients was compared with patients before transplant, an improvement of HRQOL was found in the transplanted group with both SF-36 and LDQOL. Quality of life in pretransplant patients was found to be worse in those with cirrhosis due to hepatitis C than in those with cirrhosis due to other etiologies; the reduction in quality of life was found to be greater using LDQOL than using SF-36. Transplanted patients with recurrence of hepatitis C had worse HRQOL when measured with LDQOL, but not with SF-36. Conclusions: LDQOL, a specific instrument for measuring quality of life is more reliable than SF-36 in showing quality of life impairment. A deterioration in health-related quality of life after recurrence of hepatitis C could be observed with LDQOL.

Le suivi et la compréhension des états de stress et de récupération des sportifs est un enjeu majeur, notamment dans le cadre de périodisations complètes de l’entraînement. Un déséquilibre mal maîtrisé entre le stress et la récupération peut induire une fatigue voire un épuisement psychologique et physiologique du sportif. Il en découlera des conséquences néfastes sur le bien-être et la santé de la personne mais également sur la performance individuelle et collective. Ces conséquences sont complexes et impliquent des dimensions environnementales, sociales, psychologiques et physiologiques non-spécifiques. Enfin, ces symptômes sont soumis à des variations intra et interindividuelles importantes rendant le diagnostic d’autant plus complexe à établir. En s’appuyant sur plusieurs suivis de sportifs en pôle « Espoir », ce travail de recherche montre l’évolution de variables psychologiques et physiologiques intervenant dans la réponse au stress chez le sportif. Ces travaux permettent également de mettre en évidence des variables prédictives des états de stress et de récupération. Enfin, nous démontrons que les états de stress et de récupération des sportifs impactent les états émotionnels au niveau intra et interindividuel. / Monitoring stress and recovery states is a key issue, especially in high performance sport. An imbalance between stress and recovery can induce fatigue, psychological and physiological exhaustion. Thus, negative consequences on well-being, health and individual and collective performance can be experienced. These consequences are complex as they stem from non-specific environmental, social, psychological and physiological dimensions. These phenomena are subject to important intra-individual and inter-individual variations, which make a diagnosis hard to establish. Based on a several followings of athletes from high performance structures, this research shows the evolution of psychological and physiological variables intervening as a response to stress. From these studies, some predictive variables also showed up in predicting stress and recovery states. Finally, we made evidence of the impact of athletes’ stress and recovery states on emotional states, on the intra and inter-individual levels.

Objectif:La recherche en matière de qualité de vie va croissant. Cependant, il n'existe pas de consensus sur la définition de la qualité de vie. Le concept de qualité de vie fait l'objet d'un débat scientifique et philosophique. L'objectif de cette étude est de se demander comment une approche philosophique peut nous aider à renouveler notre compréhension du concept de Qualité de vie. Méthodes: Un état des lieux de la littérature pluridisciplinaire (philosophie [Antiquité-Epoque contemporaine] et santé publique [1977-2011]) a été conduit. Puis, nous nous sommes intéressés aux théories se rapportant aux mesures de la qualité de vie, au bonheur, satisfaction, préférences et autonomie, en identifiant les théories sous-jacentes. A l'issue de cette analyse, des attentes morales fondamentales des enfants ont été identifiées. Ces attentes morales sont des valeurs formalisées correspondant à quatre principes éthiques reconnus à l'échelle internationale, élaborés par Beauchamp et Childress, dans Les principes de l'éthique biomédicale. Ces principes constituent une plateforme consensuelle; basés sur ces principes: autonomie, bienfaisance, non-malfaisance et justice. Resultats:Les notions avec lesquelles la qualité de vie entre en interaction dans le domaine de la santé publique ne mettent pas assez l'accent sur les attentes morales des enfants. Afin d'évaluer l'applicabilité des principes éthiques dans le champ de la santé, nous avons sélectionné vingt-huit instruments de mesure de la qualité de vie. Ensuite, nous avons confronté ces instruments aux principes éthiques, afin de déterminer comment les instruments de mesures de qualité de vie explorent les attentes morales. / Aims: The number of researches on QOL is increasing. However, the QOL concept is characterized by lack of agreement and showed conceptual problems. The objective of our study is to understand how philosophy can help to renew our understanding of the QOL concept. Methods: Analytical process started with a literature review in Philosophy (Antiquity to contemporary) and Public Health (in Medline-1990-2010). Conceptualization and measurement theories of happiness, preference, satisfaction, and autonomy have been also studied in order to reveal the underlying theories. Through these concepts we have isolated patient's moral expectations. These moral expectations are formalized as values corresponding to the four ethical principles developed by Beauchamp and Childress, in The principles of biomedical ethics. These principles constitute a recognized consensual platform, based on the four international principles: autonomy, beneficence, non-maleficence and justice. Results: The Public Health approaches of QOL don't focus enough on the moral expectations of children. To assess the applicability of the principles in the field of health, we are chosen twenty-eight QOL's measurement instruments. Then, we confront these instruments to ethical principles, in order to determine how the moral expectations of children are explored. This confrontation has showed that all the instruments don't tackle the four fundamental moral expectations. Nevertheless, a change in perspective has taken place during these four decades: questionnaires made since the late 1990s put more emphasis on the four ethical principles.

This study involved designing an instrument to estimate self care knowledge levels of post myocardial infarction patients. The instrument subscales were diet, smoking, exercise, signs and symptoms of cardiac distress, medications, stress and high blood pressure. Twenty-six subjects were tested following hospital discharge and again two weeks later. Test-retest reliability was performed to establish stability of the instrument. The preset criterion level of.70 for the total scale was not met. The medication subscale did meet the.70 criterion level. Reliability estimates were conducted to establish internal consistency of the instrument. The preset criterion level of.70 was not met for the total scale; however, the stress subscale did meet the.70 criterion level on the retest. Concurrent validity was estimated by comparing subscale knowledge scores with self report behavior. Point biserial coefficients did not meet the preset.70 criterion levels. These results suggest that reliability and validity estimates in the post myocardial infarction patient population were not statistically significant. (Abstract shortened with permission of author.)

Depuis le début des années 90, les gîtes touristiques du Québec, et plus particulièrement ceux de l'Estrie, connaissent une prolifération exceptionnelle. Celle-ci se produit dans un contexte ou la quasi-absence de normes qualitatives et quantitatives est susceptible, à plus ou moins brève échéance, de ternir sérieusement l'image de ce produit et de mettre en péril la réputation du gîte et la région touristique concernée. La recherche qui vient d'être effectuée nous permet de vérifier et de confirmer les hypothèses, selon lesquelles la majorité des propriétaires de gîtes n'ont pratiquement aucune formation dans le domaine touristique, que l'hôtellerie traditionnelle est soumise à une réglementation beaucoup plus rigoureuse que les gîtes, et qu'en l'absence d'une structuration adéquate et d'une catégorisation, la clientèle de ce produit n'est pas toujours très bien protégée contre la fluctuation qualitative du gîte. Plusieurs composantes du phénomène des gîtes touristiques ont été étudiées afin d'obtenir une meilleure information sur ce sujet. Ceux-ci se résument à des enquêtes sur les profils des propriétaires, des gîtes et des clients, ainsi que sur la perception de ces derniers, et enfin, à une étude des comparables des gîtes hors du Québec. Il est maintenant possible, suite aux résultats, de proposer une structure globale d'encadrement des gîtes touristiques, laquelle vise un meilleur contrôle du produit et la protection du consommateur, pouvant ainsi être appliquée à l'échelle québécoise.

BACKGROUND:No consistent relationship exists between pre-treatment expectations and therapeutic benefit from various complementary and alternative medicine (CAM) therapies in clinical trials. However, many different expectancy measures have been used in those studies, with no validated questionnaires clearly focused on CAM and pain. We undertook cognitive interviews as part of a process to develop and validate such a questionnaire.METHODS:We reviewed questions about expectations of benefits of acupuncture, chiropractic, massage, or yoga for pain. Components of the questions - verbs, nouns, response options, terms and phrases describing back pain - were identified. Using seven different cognitive interview scripts, we conducted 39 interviews to evaluate how individuals with chronic low back pain understood these individual components in the context of expectancy questions for a therapy they had not yet received. Chosen items were those with the greatest agreement and least confusion among participants, and were closest to the meanings intended by the investigators.RESULTS:The questionnaire drafted for psychometric evaluation had 18 items covering various domains of expectancy. "Back pain" was the most consistently interpreted descriptor for this condition. The most understandable response options were 0-10 scales, a structure used throughout the questionnaire, with 0 always indicating no change, and 10 anchored with an absolute descriptor such as "complete relief". The use of words to describe midpoints was found to be confusing. The word "expect" held different and shifting meanings for participants. Thus paired items comparing "hope" and "realistically expect" were chosen to evaluate 5 different aspects of treatment expectations (back pain / back dysfunction and global effects / impact of back pain on specific areas of life / sleep, mood, and energy / coping). "Impact of back pain" on various areas of life was found to be a consistently meaningful concept, and more global than "interference".CONCLUSIONS:Cognitive interviews identified wordings with considerable agreement among both participants and investigators. Some items widely used in clinical studies had different meanings to participants than investigators, or were confusing to participants. The final 18-item questionnaire is undergoing psychometric evaluation with goals of streamlining as well as identifying best items for use when questionnaire length is constrained.

Thesis (MPhil)--Stellenbosch University, 2003. / ENGLISH ABSTRACT: Little scholarly reflection has been published on the subject of medical research and translation. The aim of this study is to contribute to such literature by investigating the quality of original and retranslated medical questionnaires. The various steps medical researchers follow when translating their questionnaires are considered and discussed. Particular attention is given to questionnaires on AIDS-related topics in South Africa, as well as to the role of translation in ensuring the collection of valid data in medical research. Different translation approaches, which are followed when translating medical texts, and the impact they have on the quality of the research, are discussed. These approaches are the linguistic, text-linguistic and functional approaches. Attention is given to translators as communicators and mediators, as well as to the more general role of the translator. This study hypothesises that the quality of translations of medical research questions is largely inadequate in communicating effectively with the target culture for which they are intended. The retranslation hypothesis stating that retranslations are closer to the source text (ST) than original translations is supported. Afrikaans- and Xhosa-speaking adolescents from two secondary schools in the Cape Peninsula participated in a before-after study. These learners received self-administered medical questions on the two occasions. The first set comprised original translations, while the second set contained retranslations of the ST questions. Evaluation questions were included to assess the quality of these translations. The design, translation approach and quality of the original translations are explained, as is the development of the retranslation and evaluation questionnaires. Translations that do not consider their target audience lead to communication gaps, which have an adverse effect on the validity of data derived from questionnaires that are used in medical research. The results of most of these questions are compared for the two target cultures and are analysed qualitatively and quantitatively. The data are further explored to establish whether and how the translational quality of medical questionnaires can be improved. These aspects and the suggested translation process are discussed while bearing in mind the limitations of a study of this kind. Recommendations are made for possible improvement to the quality of translations of medical questionnaires. Projections for further studies in this direction complete this empirical investigation into translation and medical research. / AFRIKAANSE OPSOMMING: Relatief min akademiese nadenke is gepubliseer oor die onderwerp mediese navorsing en vertaling. Hierdie studie wil 'n bydrae maak tot sodanige literatuur deur 'n ondersoek na die kwaliteit van oorspronklik vertaalde en hervertaalde mediese vraelyste. Die onderskeie stappe wat mediese navorsers ten opsigte van die vertaling van hulle vraelyste volg, word bespreek. Aandag word spesifiek gerig op vraelyste oor vigsverwante temas in Suid-Afrika, asook op die rol van vertaling in die versekering dat geldige data in mediese navorsing ingesamel word. Verskeie benaderings wat gevolg word in die vertaling van mediese tekste en die impak wat hulle het op die kwaliteit van die navorsing word bespreek. Hierdie benaderings is die linguistiese, tekslinguistiese en funksionalistiese benaderings. Aandag word geskenk aan vertalers as kommunikeerders en tussengangers, asook die meer algemene rol van die vertaler. Hierdie studie veronderstel dat die kwaliteit van vertalings van mediese navorsingsvraelyste grootliks onvoldoende is om effektief met die betrokke teikengehoor te kommunikeer. Die hervertalingshipotese wat sê dat hervertalings nader aan die brontaal (Bn as oorspronklike vertalings is, word ondersteun. Afrikaans- en Xhosa-sprekende adolessente van twee sekondêre skole in die Skiereiland het deelgeneem aan 'n voor- en agtemastudie. Hierdie leerders het op beide geleenthede die vraelyste self voltooi. Die eerste stel het oorspronklike vertalings bevat terwyl die tweede stel hervertalings van die BT bevat het. Evalueringsvrae is ingesluit om die kwaliteit van hierdie vertalings te help bepaal. Die ontwerp, vertalingsbenadering en kwaliteit van die oorspronklike vertalings word verduidelik, so ook die ontwikkeling van die hervertaling- en evalueringsvraelyste. Vertalings wat nie die teikengehoor in ag neem nie, lei tot kommunikasiegapings wat die geldigheid van data afkomstig van vraelyste in mediese navorsing nadelig kan raak. Die resultate van die meeste van hierdie vrae word vir die twee teikenkulture vergelyk, en dit word kwalitatief en kwantitatief ontleed. Die data word verder ondersoek om vas te stelof en hoe die kwaliteit van die vertaling van mediese vraelyste verbeter sou kon word. Bogenoemde aspekte en die voorgestelde vertalingsproses word bespreek met inagneming van die beperkings van 'n studie van hierdie aard. Voorstelle word gemaak vir die moontlike verbetering van die vertaling van mediese vraelyste. Vooruitskattings vir verdere studie in hierdie rigting voltooi hierdie empiriese ondersoek na vertaling en mediese navorsing. Ek dra hierdie tesis op aan Mattheus vir sy liefde, geduld en al die tee-aandraery, asook aan Ettienne en Jeanelle wat met minder ondersteuning van my as andersins hulle skoolloopbane moes voltooi het.

published_or_final_version / Sports Science / Master / Master of Science in Sports Science