Made available in DSpace on 2016-04-26T20:23:16Z (GMT). No. of bitstreams: 1 Eduardo Scalon.pdf: 816996 bytes, checksum: 9393185a1530816c67be01ca3bd0d669 (MD5) Previous issue date: 2014-09-19 / The promulgation of the Code of Consumer Protection in Brazil represented a real change in how legal relationships were assessed and protected. Previously, the concepts of obligation and civil liability were oriented by private law, under the Civil Code, with classic and entrenched concepts as the autonomy of the mutual agreement in legal relations. The CDC greatly alter these concepts to determine that a particular legal relationship, consumer transaction, will be tutored directly by special rules and oriented to the protection and preservation of the rights and interests of one part of the relationship. This guidance, at first, could be configured as a violation of the principle of equal protection. However, the focus of the new rules is precisely the recognition of the need for greater consumer protection, in order to balance their relation with suppliers. This new concept challenged from law schools whose legal education has always been oriented by a dichotomy between public and private laws, as well as jurists and lawyers and judges. The acknowledgement of the new guidance that rules the relations of consumers demands a serious reflection of how apply this new protective law. Careless application of the new rules would transform this important improvement into just a way to jeopardize suppliers. These changes of the consumer protective law require a careful interpretation of several laws and the extent of his apparent collision so that conclusions they reach the scope of the balance between the parties is obtained / A promulgação do Código de Defesa do Consumidor no Brasil representou uma verdadeira quebra de paradgima na forma como as relações jurídicas eram avaliadas e tuteladas. Anteriormente, os conceitos de obrigação e responsabilidade eram orientados pelo Direito Privado, nos termos do Código Civil, com conceitos clássicos e arraigados como a autonomia das partes nas relações jurídicas. O CDC altera sobremaneira tais conceitos ao determinar que uma relação jurídica específica, relação de consumo, será tutelada diretamente por regras especiais e orientadas para a proteção e preservação dos direitos e interesses de uma das partes da relação. Essa orientação, em primeira análise, poderia se configurar como violação ao princípio da isonomia. Todavia, o foco das novas regras é justamente o reconhecimento da necessidade de maior proteção ao consumidor, justamente para equilibrar sua relação com os fornecedores. Esse novo conceito desafiou desde as faculdades cujo ensino jurídico sempre foi pautado pela dicotomia entre direito público e privado, como também os operadores do direito como advogados e juízes. A constatação da nova orientação que governa as relações de consumo demanda uma séria e cuidadosa reflexão de como se operacionaliza essa nova norma protetiva. O manejo descuidado das novas regras levaria esse importante avanço conceitual a uma maneira de prejudicar fornecedores. As alterações determinadas na tutela judicial dos direitos do consumidor obrigam a cuidadosa interpretação conjunta de várias legislações, na medida de sua aparente colisão, para que sejam obtidas conclusões que atinjam o escopo do equilíbrio entre as partes

Background Dementia has been a global priority for over a decade, with a recognition that it presents a growing challenge for all those directly affected, as well as for health and social care services. For those who are caring for a relative at home, carer burden has been found to be predictive of physical and mental health problems, and can impact on the decision to place a relative in fulltime residential care. Gaining a fuller understanding of factors that impact on caregiver burden may help inform the development of effective interventions for this population. This thesis comprises a systematic review of the literature on individual behavioural and psychological symptoms of dementia (BPSD) and their impact on carer burden, a cross-sectional study of one hundred and ten dementia caregivers, exploring the impact of executive functioning deficits, and potential mediating mechanisms, on carer burden and positive gain, and a development and feasibility study of an Acceptance and Commitment Therapy (ACT) group intervention for dementia caregivers. Systematic Review Twenty-one studies measured the association between at least one individual symptom, or symptom cluster, and carer burden, and are included in the review. All studies found at least one symptom to be significantly associated with burden. However, due to the heterogeneity of studies in this field, there was insufficient evidence to establish whether any symptoms are more closely associated than others. Issues regarding the conceptualisation of burden and measurement of BPSD are highlighted and suggestions for addressing this in future studies proposed. Method One hundred and ten dementia caregivers completed five self-report questionnaires as part of a cross-sectional design, aiming to explore the role of executive functioning deficits, dementia management strategies and experiential avoidance in 2 the development of carer burden and positive gain. Drawing on these findings, a group intervention, based on ACT, was developed and delivered to twenty-three dementia caregivers. Data on attendance, attrition and qualitative feedback was collected as an indication of acceptability, and a quasi-experimental design, involving four pre, post and follow-up measures was employed to provide preliminary data on effectiveness. The measures used in both studies were the Dysexecutive Questionnaire (DEX) (study 1 only), Zarit Burden Interview (ZBI), Positive Aspects of Caregiving Questionnaire (PAC), Dementia Management Strategies Scale (DMSS) and Experiential Avoidance in Caregiving Questionnaire (EACQ). Results & Conclusions In study one, executive functioning deficits were found to account for most variance in burden. The use of negative management strategies and Active Avoidant Behaviour (a subscale of the EACQ), were also associated with higher levels of burden, while positive management strategies were associated with positive gain. The results suggest that management strategies and experiential avoidance could be potential mediating mechanisms in the development of carer burden, and so were targeted in the ACT group intervention in study two. Findings from study two indicate that the group intervention was feasible and acceptable to caregivers, with subjective change reported in understanding of behavioural changes in the care-recipient, ability to handle negative emotions and valued living. Suggestions are made regarding alternative outcome measures for future studies in order to capture participants’ experience more fully, as there was little statistically significant change in this study. Suggestions are also made regarding future directions for the intervention.

Este estudo tem como objeto a carga de trabalho de enfermeiros que trabalham em unidades de cuidados semi-intensivos. Seu objetivo geral foi identificar e analisar a percepção dos enfermeiros de uma unidade semi-intensiva acerca do instrumento Nursing Activities Score - NAS, tendo como foco o conceito de carga de trabalho. Os objetivos específicos foram: identificar domínios do NAS considerados pelos enfermeiros como capazes de avaliar a carga de trabalho; identificar os itens que os enfermeiros consideram relevantes e manteriam no instrumento, os itens que excluiriam e os que acrescentariam; identificar itens que os enfermeiros consideram subdimensionados, para os quais aumentariam a pontuação, os superdimensionados, para os quais diminuiriam a pontuação; e, ao final, discutir implicações dessa avaliação para a organização do trabalho e seus impactos na saúde do trabalhador de enfermagem. Estudo de abordagem quantitativa do tipo descritivo exploratória, com breve aporte qualitativo, utilizando a triangulação metodológica. O local de estudo foi uma unidade de média complexidade com 35 leitos em um hospital privado do Rio de Janeiro. Participaram do estudo 28 enfermeiros e os dados foram coletados por meio de um questionário com perguntas fechadas e abertas no período de abril a maio de 2008. O tratamento dos dados foi realizado com apoio do software Excel, utilizando estatística descritiva. O material qualitativo foi organizado em categorias, usando elementos da Análise de Conteúdo Temática. Entre os domínios, verificou-se que os enfermeiros consideram o que mais avalia a carga real de trabalho o Suporte Ventilatório, com 89%, e o domínio que não avalia a carga de trabalho foi o Suporte Neurológico, com 25%. Os três domínios mais citados para serem acrescidos de atividades foram o Suporte Renal, com 25%, seguido Intervenção Especificas, com 21%, e Suporte Metabólico, respectivamente. Quanto à exclusão de atividades, só dois domínios foram mencionados: Suporte Ventilatório, com 25%, e Atividade Básica, com 21%. Os enfermeiros acham que 69% da pontuação era adequada aos itens e 31% acreditam não estar adequada. No grupo, 27% aumentariam a pontuação em alguns itens e 4% diminuiriam a pontuação. Sobre a mensuração da carga de trabalho, acreditam que essa colabora no processo de trabalho, 79%, e 57% acham que mensurar a carga de trabalho através do NAS pode auxiliar na preservação de sua saúde. Concluímos que esse instrumento mensura a carga de trabalho na opinião dos enfermeiros, mas precisa ser adaptado à realidade da unidade onde está sendo aplicada. Além disso, os enfermeiros alteraram mais os itens relacionados à carga física sem identificar a carga psíquica de trabalho como relevante, evidenciando que o trabalho de enfermagem precisa ser mais bem conhecido pelos enfermeiros no que se refere às dimensões de impacto na sua saúde. / The objective of this study was identify and analyze the perception of nurses from a Unit Semi Intensity on the instrument Nursing Activities Score (NAS) concerning the concept of work burden. Specific targets were: identify NAS domains that nurses considerate that can measure work burden ; identify the items they considerate relevant and they would keep in the instrument, the items they would exclude, and items they evaluate must be added; identify sub and super dimensioned items, adequating their punctuation; discuss implications of this assessment for work organization and the impacts on workers health. Quantitative, exploratory and descriptive study, including a brief qualitative contribution. Locus was a medium complexity health unit with 35 beds in a private hospital of Rio de Janeiro City. Subjects were 28 nurses, and data collection used a structured questionnaire, in the period from April to May, 2008. Data organization was accomplished with support of an electronic database in the software Excel, using descriptive statistical tests. Qualitative material was organized in categories, according to Thematic Analysis of Content methodology. Results showed that nurses considered that the domains can assess work burden in a range from 25% to Neurological Support to 98% for Ventilatory Support. The three domains nurses would increase punctuation were Renal Support Specific Interventions and Metabolic Support. They would exclude items of two domains: Respiratory Support (25%) and Basic Activities (21%), and 69% of nurses considered punctuation correct, and 31%, incorrect. In the samplo, 27% would increase punctuation in some items, and 4% would diminish. About work burden assessment, nurses think NAS collaborates in work process (79%), and 57% think that measure work burden through NAS helps to preserve their health. We concluded that this instrument measures work burden in the nurses' opinion, but needs to be adapted to the unit care reality where is being applied. Besides, nurses altered more the items related to physical burden, without identifying the psychic work burden as relevant, evidencing that nursing work needs to be known better by nurses concerning the impact dimensions in their health.

As cláusulas restritivas de direitos fundamentais pertencem à perspectiva da norma, ao contrário das restrições que pertencem à perspectiva do direito. É comum nos depararmos no controle judicial de constitucionalidade das leis com o fenômeno das cláusulas restritivas, sobretudo, em casos versando sobre colisões de direitos fundamentais. Por se tratar de uma característica presente em muitas normas jurídicas, tanto no nível constitucional como no nível infraconstitucional, o recurso ao sopesamento, diante da carência argumentativa de outros métodos para lidar com essa problemática, tem se mostrado uma ferramenta eficaz. O objetivo deste trabalho é descobrir o quão eficaz é essa ferramenta e se a interpretação e aplicação dos direitos fundamentais só têm a ganhar em desenvoltura argumentativa quando ela é adotada em detrimento de outras alternativas. Para isso, é preciso saber como o sopesamento opera na justificação constitucional de normas de direito fundamental, especificamente em situações nas quais uma cláusula restritiva com a estrutura de princípio é inserida na formulação de uma norma com estrutura de regra ou vice-versa. Essa circunstância revela o duplo caráter das normas de direitos fundamentais, um fenômeno normativo pouco explorado, porém muito comum, cuja argumentação jurídica traz consigo uma série de dificuldades de congruência teórica. Explorar tais dificuldades constitui a essência do objeto desta pesquisa, pois compreendê-las é imprescindível à adequada satisfação do ônus argumentativo decorrente das cláusulas restritivas de direitos fundamentais. O argumento que pretendo defender, aqui, é o de que a prática argumentativa baseada isoladamente no raciocínio do sopesamento é incapaz de produzir uma resposta adequada a esse ônus argumentativo. No entanto, quando combinada com o raciocínio da subsunção, ela tem à sua disposição uma racionalidade jurídica que permite uma leitura correta das cláusulas restritivas de direitos fundamentais na formulação de normas de estrutura dúplice. / Fundamental rights limiting clauses belongs to the perspective of the norm, contrary to limitations which belong to the perspective of law. It is common in the judicial review of legislation to come across with the phenomenon of limiting clauses, namely in cases concerning collisions of fundamental rights. Since it is a characteristic present in quite many legal norms both in the constitutional and infra-constitutional levels, the recourse to balancing because of the argumentative deficiency of other methods to deal with this problematic has showed to be an efficient tool. The objective of this essay is to discover how effective is this tool and whether the interpretation and application of fundamental rights has only to win in argumentative resourcefulness when it is adopted to the detriment of other alternatives. For that, it is needed to know how balancing operates in fundamental rights norms constitutional justification, specifically in situations where a limiting clause with principle structure is inserted in the formulation of a norm that has a rule structure, and vice-versa. This circumstance reveals the double character of fundamental rights norms, an underexplored normative phenomenon but a very common one, whose legal argumentation brings with it a series of theoretical congruency difficulties. Explore these difficulties constitutes the essence of the object of this research, because to comprehend them is indispensable to achieve an adequate satisfaction of the burden of argumentation coming from the fundamental rights limiting clauses. The argument that I seek to defend here is that the argumentative practice based solely in the balancing reasoning is unable to produce an adequate answer to this burden of argumentation. However, when combined with the subsumption reasoning, it has at its disposal a legal rationality that allows a correct reading of the fundamental rights limiting clauses in the formulation of double structure norms.

O primeiro episódio psicótico (PEP) é um período marcado por uma série de mudanças na dinâmica familiar. A família tem um papel importante no processo de tratamento desses pacientes. As atitudes dos membros familiares acerca do paciente são avaliadas por meio dos níveis de Emoção Expressa (EE) e de sobrecarga familiar. Apesar da importância do papel dos cuidadores, estudos conduzidos para avaliar as relações intrafamiliares de pacientes no PEP são escassos. Este estudo observacional teve como objetivo determinar os fatores relacionados aos níveis de EE e sobrecarga de familiares de pacientes no PEP. Participaram do estudo 100 familiares e 100 pacientes em acompanhamento em um ambulatório de um hospital universitário do interior do Estado de São Paulo, no período de janeiro de 2015 a janeiro de 2016. Para a coleta de dados foram utilizados quatro instrumentos: um formulário contendo dados sociodemográficos e clínicos, o Family Questionnaire - Versão Português do Brasil (FQ-VPB) para avaliar os níveis de EE e de seus domínios Comentários Críticos (CC) e Superenvolvimento Emocional (SEE), o Inventário de Sobrecarga do Cuidador (ISC) para medir os níveis de sobrecarga dos familiares e a Medida de Adesão aos Tratamentos (MAT) para avaliar a adesão ao tratamento. Os dados foram obtidos por meio de entrevista dirigida. Para análise utilizou-se estatística descritiva e regressão logística múltipla. O nível de significância adotado foi de 0,05. Quanto aos resultados, a maioria dos familiares (62%) foi classificada com elevado nível de EE, 63% com baixo nível de CC, 59% com elevado nível de SEE e 43% apresentaram nível moderado de sobrecarga familiar. Em relação à adesão ao tratamento, 84% dos pacientes foram considerados aderentes. Houve associação significante entre os níveis de EE, SEE e o sexo e escolaridade dos familiares, entre o vínculo com o paciente e os níveis de EE, SEE e CC, entre os níveis de sobrecarga e o diagnóstico médico e entre a idade do paciente e os níveis de CC. Além disso, houve associação significante entre os níveis de EE, SEE e CC e os níveis de sobrecarga. A análise do modelo multivariado mostrou que os anos de estudo do familiar foram considerados fatores de proteção para o desenvolvimento de níveis elevados de EE e SEE, enquanto os anos de estudo do paciente foram considerados fatores de proteção para sobrecarga moderada. Outro fator de proteção identificado foi o tipo de vínculo com o paciente, ou seja, ser pai, avós, sobrinhos, primos, tios ou colegas, representa fator de proteção para nível elevado de EE, CC e sobrecarga moderada, moderada a severa e severa. Por outro lado, familiares do sexo feminino apresentaram 4,81 vezes mais chance de apresentar nível elevado de SEE do que familiares do sexo masculino. Além disso, familiares de pacientes com diagnóstico de esquizofrenia tem 4,19 vezes mais chance de apresentar nível elevado de CC do que familiares de pacientes sem diagnóstico. Espera-se que esses resultados possam fornecer informações para elaboração de estratégias de prevenção e promoção em saúde mental que envolvam os pacientes no PEP e seus familiares / The first-episode psychosis (FEP) is a period marked by a series of changes in family dynamics. Family plays an important role in the treatment of these patients. The attitudes of family members about the patient are evaluated by the levels of Expressed Emotion (EE) and family burden. Despite the importance of the role of caregivers, conducted studies to assess the intra-family relationships of patients in the FEP are scarce. This observational study aimed to determine the factors related to EE levels and relatives to FEP patients overwhelmed. The study included 100 families and 100 patients followed up in a clinic of a university hospital in the state of São Paulo, from January 2015 to January 2016. For data collection were used four instruments: a form containing sociodemographic and clinical data; the Family Questionnaire - Brazil\'s Portuguese version (FQ-BPV) to measure the EE levels and its domains of Criticism and emotional overinvolvement (EOI); the Zarit Burden Interview (ZBI) to measure the overload levels of family members and the Measurement of Treatment Adherence (MTA) to evaluate adherence to treatment. The data were obtained by guided interview. For analysis, it was used descriptive statistics and multiple logistic regression. The significance level was 0.05. As the results, most families (62%) were classified with high level of EE, 63% with low criticism, 59% with high level of EOI and 43% had moderate level of family burden. In relation to adherence to treatment, 84% of patients were considered adherent. There was a significant association between EE levels, EOI and the gender and education of family members, between the relationship with the patient and EE levels, EOI and criticism, between the burden levels and the medical diagnosis and between the age of the patient and criticism levels. In addition, there was a significant association between EE levels, EOI and criticism and burden levels. The analysis of the multivariate model showed that the years family study were considered protective factors for the development of high levels of EE and EOI, while the years of patient study were considered protective factors to moderate overwhelm. Another protection factor identified was the type of relationship with the patient. Having another relation with the patient, ie, being a father, grandparents, nephews, cousins, uncles or colleagues, is a protective factor for high level of EE, criticism and moderate overload, moderate to severe and severe. By contrast, female members of the family had 4.81 times more likely to have high level of EOI that those family members who were male. In addition, relatives of patients with schizophrenia has 4.19 times more likely to have high levels of criticism than relatives of patients who do not have diagnosis. It is expected that these results can provide information for developing prevention strategies and promotion on mental health involving patients in the FEP and their families

O envelhecimento populacional e as alterações socioestruturais recentes no contexto brasileiro tem aumentado a probabilidade de que os cuidados prestados a idosos doentes ou dependentes sejam assumidos por indivíduos também idosos. As particularidades da sobrecarga experimentada por idosos são pouco descritas pela literatura de pesquisa gerontológica, carecendo, ainda, de modelos explicativos. O presente estudo buscou testar um modelo teórico-empírico de associações explicativas de sobrecarga subjetiva de idosos cuidadores considerando sexo, idade, intensidade da ajuda prestada, comprometimento cognitivo do idoso receptor do cuidado e autoavaliação de saúde. Trata-se de um estudo de corte transversal desenvolvido a partir dos dados de um estudo maior do Programa de Pós-Graduação em Gerontologia da Faculdade de Ciências Médicas da Unicamp Bem-estar psicológico de idosos que cuidam de outros idosos no contexto da família que envolveu idosos com 60 anos ou mais, que prestam cuidados a familiares também idosos dependentes no contexto domiciliar. Foram selecionadas variáveis de caracterização sociodemográficas e econômica da amostra, da intensidade da ajuda prestada em atividades básicas e instrumentais de vida diária, do comprometimento cognitivo do idoso cuidado por meio da aplicação do Clinical Dementia Rating Scale Sum of boxes, de autoavaliação geral da saúde e da Escala de Sobrecarga de Zarit. O modelo explicativo proposto foi testado por meio da análise de equações estruturais via Path analysis com auxílio do programa estatístico SAS System for Windows (Statistical Analysis System), versão 9.2. A amostra foi composta por 138 idosos, em sua maioria mulheres (76%), cônjuges (64%), prestando cuidado, em média, há 4,4 anos (±4,1) e auxiliando em sete tarefas (±3,6). Resultados da Path analysis revelaram caminhos associativos entre o sexo e a sobrecarga mediados pelo comprometimento cognitivo do idoso receptor de cuidados e autoavaliação de saúde do cuidador. Houve associações entre sexo e intensidade da ajuda prestada mediadas pelo comprometimento cognitivo do idoso receptor de cuidados. O modelo resultante sugere que a sobrecarga de idosos cuidadores não é produto direto da intensidade da ajuda e do comprometimento cognitivo e que a autopercepção de saúde pode influenciar seus efeitos. Reproduz as concepções presentes em modelos psicológicos de adaptação ao estresse ressaltando a centralidade da saúde como recurso importante para o cuidador idoso / The ageing population and recent socio-structural changes in Brazil have increased the likelihood that the care to the elderly will be provided by another elderly individual. The burden specificities experienced by older caregivers are little described in the gerontological literature, therefore lacking explanatory models. The present study aims to test a theoretical-empirical model of explanatory associations of subjective burden of older caregivers considering variables as sex, age, aid intensity provided, cognitive impairments of the recipient of care and self-rate health. This is a cross-sectional study based on data from a larger study entitled \"Psychological well-being of the elderly who care for other elderly in the family context\", consisting of individuals aged 60 and over who provide care to family members at the home. Sociodemographic and economic variables of the sample, the intensity of the assistance given in basic and instrumental activities of daily living, were selected from the cognitive impaired of the elderly care through the application of the Clinical Dementia Rating Scale - Sum of boxes, of general health self-assessment and the Zarit Burden Scale. The proposed explanatory model was tested through the analysis of structural equations via Path analysis. The sample consisted of 138 elderly people, mostly women (76%), spouses (64%), with average time of care 4.4 years (± 4.1) and seven tasks (± 3.6). Results from Path analysis shows associative paths between sex and overload mediated by cognitive impairments of elderly care recipient and self-rated health. There were associations between sex and intensity of aid provided mediated by the cognitive impairment of the elderly care recipient. Although it explains little of the variability, the model suggests that the caregiver burden is not a direct product of the cognitive impairment of the recipient of care and that self-rated health can influence its effects. It replicates conceptions presented in different psychological models of adaptation to stress emphasizing the centrality of health as an important resource for older caregivers

Background: We assessed the association between medical illness burden and anxiety symptoms, hypothesizing that greater illness burden would be associated with symptoms of anxiety, and that optimism would buffer, while pessimism would exacerbate, this relationship. Methods: We recruited 109 older adults, aged 65 years and older, from primary care and geriatric clinics to participate in this cross-sectional, interview-based study. Participants completed the Snaith Clinical Anxiety Scale and the Life Orientation Test – Revised, a measure of optimism/pessimism. A physician-rated measure of illness burden, the Cumulative Illness Rating Scale, was also administered. Results: Supporting our hypotheses, greater levels of overall optimism weakened, and pessimism strengthened, the association between illness burden and anxiety symptoms, after accounting for the effects of demographic, cognitive, functional, and psychological covariates. Conclusions: Bolstering positive and reducing negative future expectancies may aid in the prevention of psychological distress in medically ill older adults. Therapeutic strategies to enhance optimism and reduce pessimism, which may be well-suited to primary care and other medical settings, and to which older adults may be particularly amenable, may contribute to reduced health-related anxiety.

Objective: The nature of interpersonal relationships, whether supportive or critical, may affect the association between health status and mental health outcomes. We examined the potential moderating effects of social support, as a buffer, and family criticism, as an exacerbating factor, on the association between illness burden, functional impairment and depressive symptoms. Methods: Our sample of 735 older adults, 65 years and older, was recruited from internal and family medicine primary care offices. Trained interviewers administered the Hamilton Rating Scale for Depression, Duke Social Support Inventory, and Family Emotional Involvement and Criticism Scale. Physician-rated assessments of health, including the Karnofsky Performance Status Scale and Cumulative Illness Rating Scale, were also completed. Results: Linear multivariable hierarchical regression results indicate that social interaction was a significant buffer, weakening the association between illness burden and depressive symptoms, whereas perceived social support buffered the relationship between functional impairment and depressive symptoms. Family criticism and instrumental social support were not significant moderators. Conclusions: Type of medical dysfunction, whether illness or impairment, may require different therapeutic and supportive approaches. Enhancement of perceived social support, for those who are impaired, and encouragement of social interactions, for those who are ill, may be important intervention targets for treatment of depressive symptoms in older adult primary care patients.

The purpose of this dissertation was to evaluate the biological, behavioral, and psychosocial attributes of individuals diagnosed with chronic obstructive pulmonary disease (COPD). Specific aims were to: 1) explore the predictive power of spirometry measures for event-free survival in patients with heart failure and suspected COPD, focusing on the differences in survival between those with and without airflow limitation; 2) examine the psychometric properties of the Multidimensional Scale of Perceived Social Support (MSPSS) in patients with concomitant COPD and heart failure; and 3) test the efficacy of a theory-based, multidimensional, self-care educational intervention using an eHealth platform on measures of symptom severity and variability, anxiety and depressive symptoms, perceived self-care ability, perceived self-care adherence, and selfcare information needs (knowledge) in a sample of adult patients with stable COPD. Specific aim one was addressed by evaluation of the predictive power of spirometry measures (forced expiratory volume/second [FEV1], forced vital capacity [FVC], and the ratio of FEV1/FVC) for event-free time to combined hospitalization/mortality after controlling for clinical and sociodemographic variables. This analysis revealed that those patients with airflow limitation were 2.2 times more likely to experience hospitalization/mortality compared to those without airflow limitation. The second specific aim was addressed with a psychometric evaluation of the Multidimensional Scale of Perceived Social support (MSPSS) which included determination of internal consistency reliability, the factor structure and construct validity by hypothesis testing in participants with comorbid COPD and heart failure. The MSPSS was a valid and reliable instrument to measure perceived social support in patients with comorbid COPD and heart failure. The third specific aim was addressed by a trial of an eHealth educational intervention in participants with COPD (N = 20). This intervention resulted in significant change in symptom severity evaluation in patients categorized as having medium symptom severity for the following symptoms: distress due to cough, chest tightness, dyspnea with activity and fatigue; these symptoms were perceived as more severe in the intervention period. Anxiety, depressive symptoms and perceived self-care ability were unchanged; however, perceived self-care adherence scores improved, and knowledge needs were significantly reduced after the intervention.

Chronic pulmonary diseases include a wide range of illnesses that differ in etiology, prevalence, symptomatology and available therapy. A common link among these illnesses is their impact on patients’ vital function of breathing, high symptom burden and significantly impaired quality of life. This dissertation research evaluates disease severity, symptom burden and health behaviors of patients with three different chronic pulmonary conditions. First, alpha-1 antitrypsin deficiency (AATD) is an inherited condition that typically is associated with an increased risk of early onset pulmonary emphysema. This study examines differences in demographic, health, and behavioral characteristics and compares clinical outcomes and health related behaviors and attitudes between two severe genotypes of AATD - ZZ and SZ. The findings of the study suggest that patients with SZ genotype and less severe form of deficiency report higher number of exacerbations, comorbidities, as well as unhealthy behaviors such as lack of exercise and current smoking. In addition, individuals with the more severely deficient ZZ genotype are more adherent to disease management and prevention program recommendations and maintain a healthier lifestyle than individuals with SZ genotype. Second chronic lung disease examined in this research was chronic obstructive pulmonary disease (COPD), the fourth leading cause of death and second leading cause of disability in the United States. Prevalence and burden of cough and phlegm, two of the most common symptoms of the COPD, were assessed among participants of the COPD Foundation’s Patient-Powered Research Network (COPD PPRN). In addition, association between patient-reported levels of phlegm and cough, clinical outcomes and patients’ quality of life were evaluated. Participants’ quality of life was assessed using Patient Reported Outcome Measurement Information System instrument PROMIS-29. Association between changes in symptom severity over time and patient-reported quality of life were examined. Findings of this study indicated that severity of cough and phlegm were associated with higher number of exacerbations, greater dyspnea, and worsened patient-reported quality of life including physical and social functioning. Improvement in cough and phlegm severity over time was associated with better patient-reported quality of life. Third pulmonary illness described in this dissertation is non-cystic fibrosis bronchiectasis (NCFB), a rare and etiologically diverse condition characterized by dilated bronchi, poor mucus clearance and susceptibility to bacterial infection. Association between presence of Pseudomonas aeruginosa (PA), one of the most frequently isolated pathogens in patients with NCFFB, and disease severity was assessed utilizing enrollment data from the Bronchiectasis and NTM Research Registry (BRR). NCFB disease severity was evaluated using modified versions of validated in large international cohorts instruments, the Bronchiectasis Severity Index (BSI) and FACED. The findings of this study indicate that PA infection is common in NCFB patients, and presence of PA in patients’ sputum is associated with having moderate and high severity of bronchiectasis. In addition, the results of this study suggest that the two severity assessment instruments classify patients with NCFB differently which may be attributed to a greater number of severity markers utilized in the calculation of the BSI compared to FACED. In conclusion, the proposed dissertation aims to enhance understanding of differences in health outcomes between genotypes of AATD within AlphaNet registry, and to guide future health-promoting behaviors. It highlights the burden of common symptoms such as cough and phlegm in patients with COPD within COPD PPRN and their association with patients’ quality of life. In addition, it introduces modified indices of NCFB severity and emphasizes high burden of the disease in patients with presence of PA within the US BRR.