The incidence of Chronic Obstructive Pulmonary Disease (COPD) is expected to rise in the coming years. Presently, in health care there has been a shift of the provision of care to the home therefore, the major burden of care falls on informal caregivers. The challenges that these caregivers face may be compounded by residing in a rural area where the provision of health care services has been increasingly compromised. In the literature, there has been an abundance of information looking at the experiences of caregivers of people with other chronic illnesses. However, the information on the lived experience of caregivers of people with severe COPD has been minimal. The purpose of this study was to explore the lived experience and meaning of that experience for spousal caregivers providing care to a person with severe COPD living in rural Saskatchewan. Face-to-face, conversational interviews, along with observations of the caregivers and their spouses interactions and environment, were utilized to collect information from five women caring for their husbands with severe COPD living in rural Saskatchewan. Hermeneutic phenomenological reflection, as guided by the works of van Manen, utilized writing, collaborative discussion, life world existentials, and imaginative variation to illuminate themes and the overall essence of this experience. Five overlapping themes identified stemmed from the essence of unrelenting responsibility: 1) Assuming additional roles; 2) Ongoing vigilance; 3) Unfulfilled expectations; 4) Emotional burden; 5) Intermittent reprieve. This study assists in understanding the challenges faced by COPD caregivers and further aids in our understanding of how COPD patients manage their condition. In addition, it will facilitate the identification of strategies and actions to meet the needs sensitive to this population.

The incidence of Chronic Obstructive Pulmonary Disease (COPD) is expected to rise in the coming years. Presently, in health care there has been a shift of the provision of care to the home therefore, the major burden of care falls on informal caregivers. The challenges that these caregivers face may be compounded by residing in a rural area where the provision of health care services has been increasingly compromised. In the literature, there has been an abundance of information looking at the experiences of caregivers of people with other chronic illnesses. However, the information on the lived experience of caregivers of people with severe COPD has been minimal. The purpose of this study was to explore the lived experience and meaning of that experience for spousal caregivers providing care to a person with severe COPD living in rural Saskatchewan. Face-to-face, conversational interviews, along with observations of the caregivers and their spouses interactions and environment, were utilized to collect information from five women caring for their husbands with severe COPD living in rural Saskatchewan. Hermeneutic phenomenological reflection, as guided by the works of van Manen, utilized writing, collaborative discussion, life world existentials, and imaginative variation to illuminate themes and the overall essence of this experience. Five overlapping themes identified stemmed from the essence of unrelenting responsibility: 1) Assuming additional roles; 2) Ongoing vigilance; 3) Unfulfilled expectations; 4) Emotional burden; 5) Intermittent reprieve. This study assists in understanding the challenges faced by COPD caregivers and further aids in our understanding of how COPD patients manage their condition. In addition, it will facilitate the identification of strategies and actions to meet the needs sensitive to this population.

Despite the efficacy of pulmonary rehabilitation programs which assist patients in managing chronic obstructive pulmonary disease (COPD), the high costs and lack of availability of such programs pose considerable barriers for underserved COPD patients, such as those living in rural communities. Because of this, patients are encouraged to actively self-manage COPD. Unfortunately, COPD patients have reported dissatisfaction with the self-management education they are provided. This mixed methods study assessed the self-management learning needs of COPD patients treated at a Certified Federal Rural Health Clinic through conducting focus group interviews (n = 2) to inform the development a targeted self-management education DVD. The effectiveness of 3 distinct educational treatments (DVD vs. Pamphlet vs. DVD Pamphlet) was evaluated by comparing outcomes related to informational needs, self-management self-efficacy, and generic/lung-specific HRQoL in a randomly-assigned, multiple-group pretestposttest design with a control group (n = 41). Focus group data was analyzed using three qualitative analysis tools. Findings from the interviews indicated that patients viewed self-management as simply taking prescribed medications and reducing activity. Patients reported a lack of knowledge and skill development related to rehabilitative activities such as controlled breathing and stress reduction. A multivariate analysis of covariance was conducted to determine the effect of 3 educational treatments on multiple outcome measures. Three nontrend orthogonal planned contrasts were tested to determine selected contrast effects. The data analysis revealed that participants receiving a DVD reported statistically significantly higher levels of lung-specific physical functioning as compared to those in the Pamphlet group. Additionally, the DVD group revealed clinically significant improvements on the physical ( 19.01) and emotional ( 10.74) functioning dimensions of lung-specific HRQoL; whereas, no such improvement occurred within the Pamphlet and control groups. Results also suggested that providing patients with a Pamphlet alone was more effective than providing participants with both interventions concurrently to increase self-management self-efficacy. The simultaneous provision of both interventions did, however, enhance generic HRQoL more so than the provision of one of the two treatments alone. Finally, any type of self-management education as compared to usual care did not statistically significantly improve outcome variables among this small sample of rural patients.

Research on sex and gender in chronic obstructive pulmonary disease (COPD) has primarily focused on differences in pulmonary function. Detailed gender- and sex-based analyses of other aspects of COPD, including epidemiology, risk factors other than cigarette smoke, pathophysiology, and measurement tools are warranted. In Chapter Two we analyzed administrative health services data to compare the prevalence, mortality and use of drugs and spirometry in men and women with COPD. Contrary to recent predictions, we did not detect a dramatic increase in the prevalence or mortality of COPD over time in women compared to men. We discuss how different coding practices in medical billing can impact the results. In Chapter Three we examined sex differences in COPD phenotypes. We hypothesized that male smokers would have more emphysema whereas female smokers would have more airway wall remodeling using data from high resolution computed tomography (HRCT) scans. We did detect more emphysema in male smokers but there was no evidence of increased airway remodeling in women. We discuss the limits of HRCT to detect airway differences in women and men. In Chapter Four we examined the use of HRCT in assessing emphysema. We hypothesized that the computer-derived estimates of emphysema (the fractal value and the % low attenuation area (%LAA)) would differentiate COPD from non-COPD as accurately as the radiologist’s emphysema scores, and would provide similar predictions in both men and women. Instead, we found that the subjective rating of emphysema best differentiated COPD, and the fractal value (a measure of emphysematous lesion size) better differentiated COPD compared with an established objective measurement, the %LAA. These results were generally the same in men and women. In Chapter Five we examined characteristics of COPD in women exposed to biomass smoke. We hypothesized that biomass smoke would induce an airway disease-predominant phenotype. We found that women with biomass smoke-exposed COPD had greater airway remodeling and less emphysema than women with tobacco smoke-exposed COPD. In summary, these findings suggest that sex and gender differences are present in COPD epidemiology and pathophysiology. However, current research measurement tools may limit the ability to accurately measure these differences.

Bakgrund: Kroniskt obstruktiv lungsjukdom (KOL) är en av vår tids vanligaste sjukdomar och förväntas bli den tredje största dödsorsaken i världen inom tio år. Sjukdomen orsakar ofta andnöd, hosta och ökad slembildning. De flesta som drabbas av sjukdomen är personer som är eller har varit rökare. Personer som lever med sjukdomen upplever ofta ett lidande av att inte ha samma ork som tidigare och upplever stigmatiserande fördömanden på grund av sjukdomens troliga orsak. Syfte: Syftet med översikten var att beskriva upplevelsen av att leva med kronisk obstruktiv lungsjukdom. Metod: Detta är en litteraturöversikt som är baserad på elva vetenskapliga artiklar. Artiklarna är analyserade och kvalitetsgranskade av båda författarna i flera steg enligt rekommendationer för analysarbete av Friberg (2012). Alla artiklar är tillgängliga i databaserna CINAHL och PubMed och är utgivna mellan 2008-2013. Resultat: Resultatet visade att det fysiska symtom som var mest påtagligt var andnöden. Andra symtom som togs upp som bes värande var den ökade slem bildningen,hostan och tröttheten. Psykiska symtom som var vanligt förekommande vid KOL var ångest, depression och frustration över förlorad ork och detta framförallt till följd av andnöden. Dömande attityder kring sjukdomens uppkomst med återkommande frågor om tidigare och/eller nuvarande rökvanor skapade känslor av skuld och skam. Många valde att fortsätta att röka trots sin diagnos, och trots dessa skuldkänslor. De såg rökningen som en rutin och en aktivitet i sin vardag som de inte ville vara utan. Diskussion: KOL innebär ett stort lidande för den drabbade. Lidande kunde bland annat upplevas vid förlust av sociala interaktioner. Enligt omvårdnadsteoretikern Katie Eriksson kan livslidande uppstå när energin inte räcker till för att delta i sociala interaktioner. Lidande upplevdes även vid beroende av andra för att få vardagliga sysslor utförda. De fysiska och psykiska symtom som uppkom till följd av sjukdomen upplevdes minska livskvaliteten. Dömande attityder som kunde uppstå gentemot personer med KOL kunde orsaka ett lidande. Orsaken kan vara att personen inte känner sig värdesatt som människa enligt Eriksson. De som valde att fortsätta röka ansåg att rökningen gav livskvalitet och ett minskat lidande. / Background: Chronic obstructive pulmonary disease (COPD) is one of today's most common diseases, and is expected in less than ten years to become the third largest cause of death worldwide. The disease causes breathlessness, cough and increased sputum. Most people who contract the disease are individuals who are or have been smokers. People living with the disease often experience a hard time to not have the same strength as before and experiencing stigmatizing condemnation because the presumable cause of the disease. Aim: The aim with this study was to describe the experience of living with chronic obstructive pulmonary disease. Methods: This is a literature review based on eleven scientific articles. The articles are reviewed and quality analyzed by both the authors in several steps according to the recommendations of the analysis procedure by Friberg (2012). All the articles are available in the databases PubMed and CINAHL and are published 2008-2013. Results: The results proved that the physical symptoms that were most problematic for a person with the disease is to have problem with their breathing. Other symptoms recognized as troublesome was the increased mucous secretion, cough and fatigue, which are common in COPD. The psychological symptoms that were common were anxiety, depression and frustration about the loss of energy and this was mainly due to the breathing. Condemnatory attitudes about the disease's onset with questions about the past and/or current smoking behavior which created feelings of guilt and shame. Many people decided to continue smoking despite their diagnosis and feelings of guilt. They saw the smoking as a routine and an activity in their daily lives that they didn’t want to be without. Discussion: The discussion concluded that COPD involved a life of suffering for those who gets the disease. Suffering was experienced in loss of social interactions. According to the nursing theorist Katie Eriksson life suffering arise when energy is not sufficient to engage in social interactions. Suffering could also be experienced when a person became dependent on others to cope with everyday tasks, when the energy wasn’t enough. The physical and psychological symptoms that emerged because of the disease were experienced as a lower quality of life. Judgmental attitudes that could occur to people with COPD could cause a suffering. According to Eriksson the reason to this can be that the person does not feel valued as a person. Those who chose to continue smoking felt that smoking resulted in a quality of life and reduced suffering.

Introduction: Chronic obstructive pulmonary disease (COPD) is a chronic disease that causes illness and death over the whole world. There are a little available data about COPD patients in Vietnam and how the disease affects their health related quality of life (HRQL). Aim: The aim of this study was to examine HRQL among patients with COPD in Ho Chi Minh City, Vietnam, and investigate differences in HRQL between men and women with COPD. Method: This was a descriptive study with a cross-sectional design. The method was quantitative by using a questionnaire. The study was performed at the respiratory department at Cho Ray Hospital in Ho Chi Minh City, Vietnam. The sampling was made through a consecutive sample. The questionnaire was based on Short Form 36 (SF-36) which is a widely used questionnaire to measure HRQL. The answers from the questionnaires were turned into a scale where 0 represent the lowest possible HRQL and 100 represent the highest possible HRQL. Results: The results showed that patients with COPD have a low HRQL. Mean value for HRQL in the total group of respondents was 22.42.The result also showed that women suffering from COPD have a significant lower HRQL than men concerning total HRQL (P-value= 0.04), general health (P-value= 0.02) and pain (P-value= 0.05). Conclusion: Patients suffering from COPD in Ho Chi Minh City have a low score of HRQL. Better routines and knowledge about the symptoms and caring for these patients are needed. Keywords: Chronic Obstructive Pulmonary Disease, Health related quality of life, Vietnam, SF-36

Preliminary evidence suggests that balance deficits constitute an important secondary impairment in individuals with chronic obstructive pulmonary disease (COPD). The main objective of this thesis was to describe balance impairment and fall risk in individuals with COPD and to examine interventions for improving balance and reducing fall risk in the context of pulmonary rehabilitation. The first study of this thesis showed that falls are common in patients with COPD and that fallers are characterized by impairments in standard clinical balance measures, such as the Berg Balance Scale and Timed Up and Go. In the second study, we found that the exercise component of conventional pulmonary rehabilitation has only modest effects on balance and fall risk in COPD, highlighting the need to examine the role of balance-specific training for these patients. The third study of this thesis identified the postural control subsystems most responsible for the observed balance deficits in COPD. Compared with age-matched controls, individuals with COPD demonstrated reductions in all balance control subsystems and slower reaction times in response to external perturbations. In this study, we also showed that deficits in balance in patients with COPD were associated with peripheral muscle weakness and reduced physical activity levels. These results informed the design of the final study of this thesis, a randomized controlled trial evaluating the addition of specific balance training to pulmonary rehabilitation for improving balance in patients with COPD. Preliminary results from this study suggest that the addition of thrice weekly balance exercises to a conventional pulmonary rehabilitation program is effective for optimizing gains in measures of functional balance and fall risk. The findings from the four studies included in this thesis support the need for incorporating balance assessment and treatment for at-risk patients with COPD, as part of their comprehensive management.

Research on sex and gender in chronic obstructive pulmonary disease (COPD) has primarily focused on differences in pulmonary function. Detailed gender- and sex-based analyses of other aspects of COPD, including epidemiology, risk factors other than cigarette smoke, pathophysiology, and measurement tools are warranted. In Chapter Two we analyzed administrative health services data to compare the prevalence, mortality and use of drugs and spirometry in men and women with COPD. Contrary to recent predictions, we did not detect a dramatic increase in the prevalence or mortality of COPD over time in women compared to men. We discuss how different coding practices in medical billing can impact the results. In Chapter Three we examined sex differences in COPD phenotypes. We hypothesized that male smokers would have more emphysema whereas female smokers would have more airway wall remodeling using data from high resolution computed tomography (HRCT) scans. We did detect more emphysema in male smokers but there was no evidence of increased airway remodeling in women. We discuss the limits of HRCT to detect airway differences in women and men. In Chapter Four we examined the use of HRCT in assessing emphysema. We hypothesized that the computer-derived estimates of emphysema (the fractal value and the % low attenuation area (%LAA)) would differentiate COPD from non-COPD as accurately as the radiologist’s emphysema scores, and would provide similar predictions in both men and women. Instead, we found that the subjective rating of emphysema best differentiated COPD, and the fractal value (a measure of emphysematous lesion size) better differentiated COPD compared with an established objective measurement, the %LAA. These results were generally the same in men and women. In Chapter Five we examined characteristics of COPD in women exposed to biomass smoke. We hypothesized that biomass smoke would induce an airway disease-predominant phenotype. We found that women with biomass smoke-exposed COPD had greater airway remodeling and less emphysema than women with tobacco smoke-exposed COPD. In summary, these findings suggest that sex and gender differences are present in COPD epidemiology and pathophysiology. However, current research measurement tools may limit the ability to accurately measure these differences.

A Doença Pulmonar Obstrutiva Crônica (DPOC) é uma doença caracterizada pela limitação ao fluxo aéreo, não totalmente reversível. Dentre as terapêuticas indicadas, a reabilitação pulmonar é uma estratégia de tratamento multidisciplinar, que tem por objetivo melhorar a qualidade de vida do paciente, reintegrando-o à sociedade. Objetivos: Descrever o processo e os custos de implantação na forma de um projeto de extensão universitária, os motivos da evasão e os resultados obtidos com um programa de reabilitação pulmonar. Material e Métodos: Após formar um grupo multidisciplinar no Centro Universitário Feevale e estabelecer uma parceria com a Secretaria Municipal da Saúde de Novo Hamburgo, os pacientes portadores de DPOC são encaminhados ao programa de reabilitação pulmonar (PRP). São avaliados pelo médico pneumologista, fisioterapeuta, nutricionista, psicólogo e educador físico. Após estas avaliações são formados grupos de até 16 pacientes que permanecem por um período de 4 meses, com três sessões semanais de treinamento físico, orientações nutricionais, encontros educativos e grupos de apoio psicológico. Foram avaliados o perfil destes pacientes, os custos para a implantação, as causas de evasão após o início do programa, bem como os resultados obtidos após o período de tratamento, medidos através do teste de caminhada dos seis minutos, do trabalho de caminhada através do produto distância-peso corporal e do questionário Saint George de qualidade de vida. Para a análise dos resultados foi utilizada a estatística descritiva, para comparação das médias o Teste t de Student. Resultados: O PRP foi implantado na forma de um projeto de extensão universitária, com um custo total de R$ 64 224,60. Foram avaliados 134 pacientes encaminhados dos postos de saúde do município de Novo Hamburgo e dos municípios vizinhos. Do total, 38 (28,4%) pacientes foram excluídos e 7(5,2%) foram a óbito antes de completar a avaliação. Desses, 89 (66,5%) portadores de DPOC de moderado a grave foram incluídos no PRP. A média de idade dos pacientes foi de 63,5±9,9 anos, predominou o sexo masculino 62(69%), com índice de massa corporal (IMC) médio de 23,5±5,3 Kg/m2, com média de Volume expiratório forçado no primeiro segundo (VEF1) de 1,16L(42,8±23,4% do previsto). Dos incluídos no PRP, 40 (44,9%) abandonaram, principalmente por problemas sócio-econômicos e 49 (55,1%) concluíram a reabilitação. Os dados para análise antes e depois do PRP estavam disponíveis para 37 pacientes que formaramo grupo para analisar os resultados do PRP. No teste de caminhada dos seis minutos, ocorreu uma variação significativa de 34,12m na média distância (367,15±101,93m vs. 401,27±95,55m; p <0,001). Ocorreu melhora significativa de 2,65 Km.Kg-1 (24,36±9,62 Km.Kg-1 vs. 27,01±10,0 Km.Kg-1) no trabalho de caminhada medido pelo produto distância-peso e uma melhora significativa com redução de 11% (46 vs. 35; p<0,001) no total do questionário Saint George de qualidade de vida. Conclusões: O PRP pode ser implantado na forma de um projeto de extensão universitária, com custo relativamente baixo pela sua abrangência e benefícios. A condição social dos pacientes foi o maior determinante da evasão, mas os pacientes que concluíram o PRP apresentaram uma melhora significativa na sua capacidade de exercício e na qualidade de vida. / Chronic obstructive pulmonary disease (COPD) is characterized by partially reversible airway obstruction. Pulmonary rehabilitation is one of the therapeutic interventions indicated for the treatment of COPD, and consists of a multidisciplinary treatment strategy whose purpose is to improve quality of life and to reintegrate patients into society. Objective: To describe the process and cost of implementing a university extension program for pulmonary rehabilitation, as well as the causes of patient dropout and the results achieved. Material and methods: After a multidisciplinary group was formed at Centro Universitário Feevale and a partnership was established with the Municipal Department of Health of Novo Hamburgo, patients with COPD were referred to the pulmonary rehabilitation program (PRP). They were examined by a pulmonologist, a physical therapist, a nutritionist, a psychologist and a physical education specialist. After evaluations, groups of up to 16 patients were formed and had 3 weekly meetings for 4 months. During meetings, patients participated in physical exercise training, nutritional counseling, educational meetings and psychological support groups. We evaluated patient data, costs of program implementation and causes of patient dropout. Also, the results obtained after PRP were measured by the 6-minute walk test, work calculated as the product of distance x body weight, and the St George respiratory questionnaire to assess quality of life. Descriptive statistics was used to analyze results, and the Student t test, to compare means. Results: PRP was implemented as a university extension program at a total cost of R$ 64,224.60. One hundred thirty-four patients referred by health stations in Novo Hamburgo and neighboring cities were evaluated; 38 (28.4%) of these patients were excluded and 7 (5.2%) died before they completed the initial evaluation. The other 89 (66.5%) patients with moderate to severe COPD were included in PRP. Mean patient age was 63.5±9.9, 62 (69%) were men, mean body mass index (BMI) was 23.5±5.3 kg/m2, and mean forced expiratory volume in one second (FEV1) was 1.16 L (42.8±23.4% of predict value). Forty (44.9%) patients dropped out, most of them due to socioeconomic problems, and 49 (55.1%) completed the rehabilitation program. Data for the analysis before and after PRP were available for 37 patients, who formed the group for analysis of PRP results. The 6-minute walk test showed a significant increase of 34.12 m in distance(367.15±101.93 m vs. 401.27±95.55 m; p <0.001). A significant improvement of 2.65 km.kg-1 (24.36±9.62 km.kg-1 vs. 27.01±10.0 km.kg-1) was observed in distance x body weight product, and total scores of the St. George questionnaire showed a reduction of 11% (46 vs. 35; p<0.001), which indicated a significant improvement in quality of life. Conclusion: PRP was implemented as a university extension program at a relatively low cost when considering its extent and benefits. Social condition was the main cause of patient dropout, but those that completed PRP had a significant improvement in their capacity for physical exercise and in quality of life.

Introdução: A Doença Pulmonar Obstrutiva Crônica (DPOC) está associada a uma resposta inflamatória anormal dos pulmões com consequências sistêmicas. A espirometria parece não ser suficiente para acompanhamento das alterações sistêmicas, que pode ser auxiliada por marcadores sanguíneos de inflamação. Não há consenso sobre a participação da proteína Creativa (PCR) nesse processo. Objetivo: Nosso objetivo foi verificar a relação entre a PCR, como marcador inflamatório, e as alterações musculares sistêmicas da doença: qualidade de vida, capacidade funcional, força muscular respiratória e periférica em pacientes portadores de DPOC. Métodos: Foram avaliados sessenta e dois pacientes não internados com doença pulmonar obstrutiva crônica estável, mediante a determinação da pressão inspiratória máxima (PI máx.), pressão expiratória máxima (PE máx.), teste de caminhada de seis minutos (TC6), dinamometria de membros superiores, função pulmonar à espirometria, manovacuometria, questionário de qualidade de vida do Hospital Saint George (SGRQ) e PCR. Resultados: Para avaliar a associação entre as variáveis contínuas, foram aplicados os coeficientes de correlação de Pearson (r) ou Spearman (rs), sendo encontrada correlação da PCR com as seguintes variáveis: item de domínio “sintomas” (SG), rs= - 0,410 e p= 0,003 e idade dos pacientes, rs= 0,318 e p= 0,042 para p<0,05. Conclusão: Concluímos que a proteína C-reativa correlaciona-se com o item de domínio “sintomas” do SGRQ e com a idade em portadores de DPOC, quando não incluídos em episódio agudo dos sintomas e que passe a ser considerada para a avaliação do fator inflamação sistêmica, em permanência nesses pacientes. / Introduction: Chronic Obstructive Pulmonary Disease (COPD) is associated with an abnormal inflammatory response of the lungs with systemic consequences. Spirometry is not sufficient to monitor systemic changes that might be aided by blood markers of inflammation. There is no consensus on the involvement of C-reactive protein (CRP) in the process. Objective: Our objective was to assess the relationship between CRP as an inflammatory marker and systemic muscular changes of CPOD: quality of life, functional capacity, peripheral muscle strength and respiratory muscle strength. Methods: Were assessed 62 outpatients with stable chronic obstructive pulmonary disease, by determining the maximum inspiratory pressure (PI max.), maximum expiratory pressure (PE max.), six-minute walk test (6MWT), grip strength test using dynamometer, lung function with spirometry, manovacuometry, Saint George Respiratory Questionnaire (SGRQ) and CRP. Results: To assess the correlation between continuous variables, we applied the Pearson correlation coefficient (r) or Spearman coefficient (rs). We found correlation of PCR with the following variables: "symptoms" domain item (SG), rs= - 0,410 and p = 0.003, and patient age, rs= 0,318 and p = 0.042 with p <0.05. Conclusion: We conclude that C-reactive protein correlates itself with the "symptoms" domain item of the SGRQ and with age in patients with COPD, when not included in symptoms acute episodes. We suggest that PCR starts to be considered for the evaluation of systemic inflammation factor, always present in these patients.