Thesis (M.S.)--University of Michigan, 1997. / Includes bibliographical references.

Thesis (M.S.)--University of Wisconsin-Madison, 1994. / Typescript. eContent provider-neutral record in process. Description based on print version record. Includes bibliographical references (leaves 62-65).

Thesis (M.S.)--University of Michigan, 1976.

Thesis (Ph. D.)--University of Washington, 1996. / Vita. Includes bibliographical references (leaves [206]-215).

Thesis (Ph.D.)--Virginia Commonwealth University, 2010. / Prepared for: Dept. of Health Administration. Title from title-page of electronic thesis. Bibliography: leaves 200-217.

Asthma, gout and hypothyroidism are common chronic medical disorders encountered in general practice. Optimal disease management according to standard guidelines are fundamental to disease control. This study aimed to objectively and subjectively assess the quality of care provided in a private general practice to patients with asthma, gout and hypothyroidism by means of a practice audit and questionnaire based survey. These tools proved to be an effective measure for the quality of care provided and identified areas needing improvement. Patient’s understanding of the disease process plays an important role in both patient satisfaction ratings and success of disease control. The medical audit identified and highlighted specific areas of care that can be improved. Evidence from the practice audit showed that control for asthma based on the PEFR readings, gout based on the serum uric acid reading and hypothyroidism based on a blood TSH reading, was found at 56.7%, 43.3%, and 66.7 % respectively. In addition acute attacks of asthma and gout occurred in 22.7% and 32.8% respectively. This does not represent good control. Definition of disease control for each condition is placed in the text. The survey revealed overall patient understanding for the disease processes of asthma, gout and hypothyroidism to be 69.6%, 73.3% and 66.8% respectively. The patient survey satisfaction rating for asthma, gout and hypothyroidism was 93.1%, 93.9% and 89.2% respectively. Patient suggestions for improvement included three dominant themes: better assessment of disease control, education about their chronic disease and implementation of a clearer referral process. The study concludes that disease control can be achieved if patients are educated about their chronic disease and regularly followed up to assess disease control based on standard management guidelines. Patients' disease education was a major contributing factor for satisfaction rating bias. The study confirms that in spite of high satisfaction ratings, patients are not optimally managed with substandard disease control. It would be expected that as disease education improves, the quality of care will improve, but satisfaction ratings will decrease.

Background The number of people in Sub-Saharan Africa dying of heart failure is increasing. However, little is known about their experiences and needs. In Kenya, palliative care services are available for some people with cancer and HIV/AIDS, but these services may not be configured to meet the needs of patients dying with heart failure. Aims and objectives This study aimed to explore the experiences of patients living and dying with heart failure in Kenya. Specifically, it sought to understand how patients describe their illness experience, their experience of receiving treatment and care, and their perspectives on how their care could be improved. Methods Twenty patients admitted and diagnosed with advanced heart failure were purposively recruited from a rural district hospital. Serial in-depth interviews were conducted with patients at 0, 3 and 6 months after recruitment. Bereavement interviews were carried out with carers. All interviews were conducted and recorded in the local language of Kiswahili, transcribed into English and analysed thematically with the assistance of Nvivo software. Results Forty-four interviews were conducted. Three significant phases were identified in patients’ experience (i) coming to a diagnosis, (ii) living with heart failure and (iii) dying with heart failure. Before receiving the diagnosis of heart failure, many patients were mistakenly misdiagnosed with common serious infectious conditions such as pneumonia, tuberculosis, and malaria. Once treatment commenced and physical symptoms abated, many patients were hopeful of a full recovery, unaware that there would be a progressive deterioration in their health. Social relationships were a source of encouragement but were strained by the accumulating cost of care. Patients particularly those who were younger, felt anxious or depressed when symptoms failed to improve with treatment. Uncertainty was prevalent and underlay patients’ experiences from the time of diagnosis to the end of life. Very few patients spoke about the possibility of death believing that life and death are in the hand of God. Majority of patients had poor understanding of their illness and expressed a need for more information and better communication with health professionals. Conclusion Patients with advanced heart failure in Kenya have significant unmet physical, psychological, social, spiritual, financial, and information needs. Patients’ narratives pointed to how they could benefit from a holistic approach aimed at catering for their multidimensional wellbeing. There is need to improve patients access to information and support better communication with health professionals. Chronic disease management aimed at (i) early identification of patients (ii) improving treatment and care guidelines and (iii) promoting primary and secondary prevention to identify, treat and control common risk factors for heart failure is needed.

L’irruption d’une maladie chronique constitue une rupture dans la vie des individus, qui les conduit à repenser leur projet professionnel. A partir d’un dispositif collectif d’échanges sur le thème du maintien ou du retour au travail, de 35 entretiens semi-directifs de recherche et de 27 entretiens d’orientation, notre étude tend à montrer que le projet des personnes malades s'élabore soit dans la continuité de leur situation de travail antérieure, soit dans un désir de changement. Les activités des sujets, de travail ou hors travail, apparaissent comme un moyen de se dégager de la maladie et d’éprouver ce dont on est capable. Elles sont sources de projection de soi dans l’avenir et permettent, alors même que la référence à celui qu’on était auparavant n’est plus valide, d’étayer le projet sur des expériences concrètes. En cela, elles sont un déclencheur des réorganisations. Le projet est donc un moyen de restauration des capacités d’action sur soi et sur son environnement. / Whenever a chronic disease arises, it does mark a break in people’s life, which often leads them to reconsider their vocational project. Through a collective workshop about how to hang on or to return to work and the addition of 35 semi-directive research interviews and 27 counseling interviews, we aim to show that people suffering from a chronic disease build their vocational project, by either carrying on their previous professional life or trying to change it. Both work and off- work activities seem to be a way of escaping the disease and assessing their own capabilities. Through activities, people can picture themselves in the future and build a project based on real experiences, although they are not anymore the person they used to be. Thus, these activities cause reorganizations. The project becomes therefore a way of restoring the ability to act by oneself and on the environment.

Objetivo: Comparar o perfil dos pacientes com fibrose cística de dois centros de referência de Porto Alegre, Hospital São Lucas da Pontifícia Universidade Católica e Hospital da Criança Santo Antônio e correlacionar os pacientes como um grupo em relação a morbidade. Metodologia: Estudo transversal, retrospectivo, com 83 pacientes com diagnóstico de fibrose cística, idade entre um mês a dezoito anos. As variáveis analisadas pelos dois grupos foram: idade atual, idade diagnóstica, idade inicio dos sintomas, cor, número de exacerbações ao ano, internações no ano, internações na vida, idade dos pais, comprometimento pulmonar, comprometimento digestivo, íleo meconial, peso atual e ao diagnóstico, estatura atual e ao diagnóstico, colonização bacteriana em 2010, primeira colonização por Staphylococcus aureus (SA), primeira colonização por Pseudomonas aeruginosa (PSA), primeira colonização pelo Complexo Burkholderia cepacia (CBc), escore de Shwachman-Kulczycki (S-K), variáveis espirométricas, escore socioeconômico (CCEB), terapia medicamentosa, fisioterapia, distância percorrida no Teste de Caminhada dos 6 minutos (TC6M). As variáveis analisadas em conjunto foram: peso atual, estatura atual, colonização bacteriana, variáveis espirométricas, CCEB, S-K e TC6M, internações no ano de 2010 e exacerbações no ano de 2010. Resultados: As variáveis com diferença estatística entre centros foram: mais internações no ano no HCSA (p<0,001), mais internações na vida no HCSA (p<0,001), menor idade da primeira colonização por SA no HCSA (p=0,008), menor idade da mãe no HCSA (p=0,030), menor S-K no HCSA (p=0,001), menor escore sócioeconômico no HCSA (p=0,021), maior uso de dornase alfa no HCSA (p=0,003), maior uso de antibioticoterapia inalatória no HCSA (p=0,006), menor uso de solução salina hipertônica (SSH) no HCSA (p<0,001). As correlações significantes: TC6M com capacidade vital forçada e volume expiratório forçado no primeiro segundo e S-K (p=0,001, r=0,4), S-K com CCEB (p=0,02, r=0,3), CCEB com internações na vida (p=0,03, r=-0,3). Conclusão: Os centros estudados recebem uma população distinta de pacientes, tanto do ponto de vista sócioeconômico, como em relação à gravidade da doença, o que interfere na escolha da terapia medicamentosa utilizada. / Objective: To compare the profile of patients with cystic fibrosis in two reference centers in Porto Alegre, HSL-PUCRS and HCSA and to correlate the patients as a group in relation to morbidity. Methodology: Cross sectional, retrospective study, with 83 patients diagnosed with Cystic Fibrosis, aged one month to eighteen years. The variables analyzed in both groups were: current age, age of diagnosis, age onset of symptoms, color, number of exacerbations in 2010, hospitalizations in 2010 and lifetime hospitalizations, parental age, pulmonary and digestive impairment, meconium ileus, current and diagnosis weight , current and diagnosis stature, and bacterial colonization in 2010, the first SA colonization, the first PSA colonization, the first B. cepacia colonization, Shwachman-Kulczycki score (S-K), spirometric variables, socioeconomic score (CCEB), drug therapy, physiotherapy, walked distance of the Six-Minute Walk Test (6MWT). The variables analyzed together were: current weight and height, current bacterial colonization, spirometric variables, CCEB, SK and 6MWT, admissions in 2010 and exacerbations in the year 2010. Results: The variables with statistically significant differences between centers were more hospitalizations in 2010 in HCSA (p <0.001), more lifetime hospitalizations in the HCSA (p <0.001), lower age at first SA colonization in HCSA (p = 0.008), the youngest mother in the HCSA (p = 0.030), lower S-K in HCSA (p = 0.001), lower socioeconomic score in HCSA (p = 0.021), greater use of DNase in HCSA (p = 0.003), higher use of inhaled antibiotics in HCSA (p = 0.006), less use of hypertonic saline in HCSA (p <0.001). The significant correlations were: 6MWT with lung function and S-K (p = 0.001, r = 0.4), S-K with socioeconomic score (p = 0.02, r = 0.3), socioeconomic score with hospitaizations(p = 0.03, r =- 0.3). Conclusion: The study centers receive a distinct population of patients, both in terms of socioeconomic, as in the severity of the disease, which interferes with de choice of drug therapy used.

Late onset Alzheimer’s disease (LOAD) is the commonest form of dementia, affecting approximately 850,000 patients in the UK alone, predicted to exceed one million by 2025. The cause of LOAD is complex, but several large Genome Wide Association Studies have highlighted 21 genetic loci associated with this devastating disease and the ATP-Binding Cassette Protein, family A, member 7 (ABCA7) is one of these genetic loci. However, the exact reasons behind this association are still unknown, focusing work on identifying functional, pathogenic mutations within this locus. A total of 240 exonic variations within ABCA7 were therefore annotated in order to identify ones potentially altering the functionality of ABCA7. A total of five variants were predicted to be damaging by in silico annotation tools: rs3752233; rs59851484; rs3752237; rs114782266 and a novel mutation at genomic position 19:1056958. These were genotyped in the ARUK DNA Bank resource and three (rs59851484, rs3752239 and 19:1056958) showed tentative association with LOAD. However, lack of power in this study prevented any definitive associations from being formed. A further two variants were examined within functional cell assays. rs881768 had been predicted to affect the splicing of the ABCA7 protein and appeared to do so within minigene cellular assays. However, this did not appear to be the case when RNA from brain tissue harbouring this variation was examined. rs2020000 was examined through the dual luciferase assays, with the minor allele seeming to down regulate the reporter protein by approximately 30% (p < 0.02) in these in vitro assays. Functional variations within the ABCA7 locus do play a role in LOAD risk and improvements within functional databases and annotation programmes will assist in identifying these causative mutations, in order to put a halt to LOAD, as well as other destructive complex disorders.