In Australia, women with breast cancer comprise one of the largest groups of cancer survivors. As a consequence of this, and improved survival rates, the interest in programs to enhance the recovery of cancer survivors is growing. Exercise during and after treatment has been identified as a potential strategy to assist women throughout their treatment and positively influence the recovery and health-related quality of life (HRQoL) of breast cancer survivors. Through the use of an existing data source, this study investigated physical activity rates, explored the factors associated with low levels of physical activity participation, and assessed the relationship between levels of activity and HRQoL among women diagnosed with breast cancer. The population-based sample, obtained in 2002 was comprised of 287 women newly diagnosed with breast cancer, residing in South-East Queensland. Women were followed-up (via subjective questionnaire and objective physical testing) every three months over a 12-month period, from six months post-diagnosis. Physical activity was assessed using the Behavioural Risk Factor Surveillance System (BRFSS) while HRQoL was assessed using the Functional Assessment of Cancer Therapy for breast cancer (FACTB+4). Based on National Physical Activity Guidelines, women were categorised as being sufficiently active, insufficiently active or sedentary at each of the five testing phases (specifically at 6-, 9-, 12-, 15- and 18-months post-diagnosis). Rates of participation in physical activity were relatively stable over the testing period. At 18 months post-diagnosis, 44%, 43% and 13% of women, respectively, were categorised as being sufficiently active, insufficiently active or sedentary. The sedentary or insufficiently active women were more likely to be older, obese or overweight, lack private health insurance, and have received both chemotherapy and radiotherapy, compared with sufficiently active women. Sedentary women consistently reported a lower HRQoL compared to active women (sufficiently or insufficiently active) over the 12-month testing period. This was especially apparent amongst the group of younger women (aged less than 50 years at diagnosis) (p=0.02). This work is among the first to explore physical activity rates specifically among Australian breast cancer survivors, and highlights the potential importance of participating in physical activity to optimise HRQoL during recovery from breast cancer. Specific attention to promote physical activity to the identified group of sedentary and insufficiently active survivors is of particular importance.

Due to advances in detection and treatment, increasing numbers of women are diagnosed with, and surviving, breast cancer each year, making women with breast cancer one of the largest groups of cancer survivors. Hence, ensuring good healthrelated quality of life (HRQoL) following treatment has become a focal point of cancer research and clinical interest. While our understanding about the impact of breast cancer is improving, little is known about the HRQoL among survivors in non-urban areas. This is important locally, as 45% of breast cancer survivors in Queensland, Australia, live outside major metropolitan areas. Therefore, this study investigated the HRQoL and accompanying correlates among regional and rural breast cancer survivors, and made comparisons with urban breast cancer survivors as well as women from the general population without a history of breast cancer. Three population-based studies comprise this project. Original data were collected by way of self-administered questionnaire from 323 women, diagnosed with a first, primary, invasive, unilateral breast cancer during 2006/2007 and residing in regional or rural areas of Queensland, 12 months following diagnosis. HRQoL was assessed using the Functional Assessment of Cancer Therapy, Breast plus additional concerns (FACT-B+4) questionnaire. Data from two existing data sources were also utilised. Women diagnosed with a first, primary, invasive, unilateral breast cancer in 2002 and residing within 100kms of Brisbane provided information on HRQoL, measured by the FACT-B+4, via self-administered questionnaire at six (n=287), 12 (n=277) and 18 (n=272) months post-diagnosis. Data at 12 months post-diagnosis was utilised for comparison with region and rural women with breast cancer. General population data for HRQoL, collected by self-administered questionnaire in 2004 using the Functional Assessment of Cancer Therapy-General (FACT-G) questionnaire, were derived from a subgroup of female residents without a history of breast cancer from urban (n=675), regional (n=184) and rural (n=281) Queensland. The two studies involving women with breast cancer were recruited sequentially through the Queensland Cancer Registry, whereas the study involving the general population used telephone survey methods initially to identify participants. Women who participated in all studies were aged between 30 and 74 years. Raw scores for overall HRQoL (FACT-B+4, FACT-G) and subscales were computed. According to developers of the instrument, raw score differences of eight points between groups on the FACT-B+4 scale and five points on the FACT-G scale reflect a clinically meaningful differences in HRQoL. Age-adjusted, mean HRQoL was similar between regional and rural women with breast cancer 12 months following diagnosis (e.g., FACT-B+4: 122.9 versus 123.7, respectively, p=0.74). However, younger regional and rural survivors reported lower HRQoL scores compared with their older counterparts (e.g., FACT-B+4: 112.0 and 115.8 versus 129.3 and 126.2, respectively, p<0.05 for all). In addition to age, other important correlates of lower overall HRQoL (FACT-B+4) among regional/rural breast cancer survivors included: receiving chemotherapy, reporting complications post-surgery, poorer upper-body function than most, higher amounts of stress, reduced coping, being socially isolated, not having a confidante for social-emotional support, unmet healthcare needs, and low self-efficacy. Multiple linear regression analysis was used to address the hypothesis regarding similarity of HRQoL following breast cancer among women residing in regional and rural locations. After adjusting for the above factors, there was no statistically significant or clinically important difference in overall HRQoL (FACT-B+4) between regional and rural women with breast cancer 12 months following diagnosis (122.1 versus 125.1, respectively, p=0.07). Data from regional and rural women were pooled, based on the above analyses, and compared with urban women. Multiple linear regression analysis was used to test the hypothesis that HRQoL following breast cancer among women residing in regional/rural locations would be lower than that reported by women residing in urban locations. Potential confounders of the association between overall HRQoL (FACT-B+4) and place of residence included: marital status, upper-body function, amount of stress and perceived handling of stress. After adjusting for factors that differed between urban and regional/rural survivors, overall HRQoL (FACT-B+4) was lower among younger regional/rural survivors than their urban peers, and the findings were both statistically significant and clinically important (115.3 versus 123.7, respectively, p=0.001). Older women reported similar mean HRQoL, regardless of regional/rural or urban residence (128.2 versus 131.6, respectively, p=0.03). Further multiple linear regression analyses were undertaken to investigate whether women with breast cancer would report HRQoL equivalent to that reported by similarly-aged women in the general population. After adjusting for potential confounding factors that are known or suspected risk factors for breast cancer (age, marital status, education level, private health insurance, smoking status, physical activity, body mass index, co-morbidities), overall HRQoL (FACT-G) among breast cancer survivors was comparable to the general population 12 months following diagnosis (urban: 88.0 versus 86.9, respectively, p=0.28; regional/rural: 86.2 versus 85.8, respectively, p=0.79). However, 26% of survivors experienced worse overall HRQoL (FACT-G) compared with normative levels. HRQoL subscales contributing most to this deficit were physical well-being, with 29% of breast cancer survivors reporting scores below the norm, and emotional well-being among younger women, with 46% reporting scores below the norm. Logistic regression analysis was used to identify subgroups of breast cancer survivors who reported HRQoL below normative levels; reporting poorer upper-body function than most and not handling stress well increased the odds of reporting overall HRQoL (FACT-G: odds ratios (ORs) = 4.44 and 4.24, respectively, p<0.01 for both), physical well-being (ORs = 5.93 and 2.92, respectively, p<0.01 for both) and emotional well-being (among younger women: ORs = 2.81 and 5.90, respectively, p<0.01 for both) below normative levels. The cross-sectional nature of the study design for regional and rural breast cancer survivors, and the potential selection and response biases in all three studies, represent the main limitations of this work. The cross-sectional design precludes causal inference about observed associations, but even characterising relevant correlates allows for adjustment of potential confounding and provides insight into factors that may be important in contributing to HRQoL among breast cancer survivors. Moreover, the potential impact of the latter limitations is in the conservative direction, whereby differences in HRQoL between groups will be more difficult to identify. Since these biases are expected to be present to a similar degree across all study groups, the absolute difference in HRQoL by residence and cancer status observed are likely to exist. In contrast, the work is supported by a population based, state-wide sample of breast cancer survivors, comparisons with the general population, and use of standardised instruments. Therefore, the conclusions derived from this research are likely to be generalisable to the wider population of women in Queensland with unilateral breast cancer, aged 74 years or younger, and perhaps to similar women in other western countries, depending on variations in healthcare systems and the provision of oncology services. This research supports the initial supposition that while some findings may generalise to all breast cancer survivors, non-urban breast cancer survivors also have distinct experiences that influence their HRQoL. Results from this work highlight the HRQoL domains and characteristics of breast cancer survivors most in need of assistance to facilitate recovery following diagnosis and treatment. Characteristics include some already established and reconfirmed here, namely, emotional wellbeing among younger women, and other novel subgroups, including regional/rural survivors who receive chemotherapy or have a low self-efficacy and all survivors, regardless of residence, with upper-body problems or a low perception of handling stress. These results demonstrate the potential for identifying subgroups of women with breast cancer at risk for low HRQoL who may benefit from additional attention and possible tailored recovery interventions to increase their overall HRQoL. As such, researchers and clinicians need to consider the role of these factors when designing interventions to assist women as they deal with the challenges imposed upon them by their breast cancer. However, it was found here that the FACT-G instrument has ceiling effects. This means that positive changes reflecting improved status, such as those achieved through recovery interventions, will often fail to be measured appropriately if there is no room to indicate improvements. Overall HRQoL results indicated that there is room for improvement past 12 months following treatment, with a significant proportion of breast cancer survivors reporting HRQoL below normative levels. HRQoL concerns 12 months following diagnosis are likely to be distinct from the more acute issues reported earlier on in the literature. Therefore, the development of a cancer survivorship module to accompany the FACT-G would be useful to counteract the ceiling effects observed as well as to capture issues distinct to cancer survivorship. This is the first study to describe in detail the HRQoL of breast cancer survivors across all areas of Queensland and to compare it to the HRQoL reported by the general population of Queensland. Therefore, it represents a unique and substantial contribution to the existing knowledge on survivorship issues following diagnosis and treatment for breast cancer in Australia. Through this research, a number of questions remain that could be addressed by relevant investigations and which are likely to be important in the future to ultimately guide practice. Specifically, implementation of the concept of HRQoL in practice is the next important step forward. Furthermore, the development of a survivorship care plan that incorporates guidelines on HRQoL recovery could provide options for referral and support.

Doctor of Philosophy(PhD) / The aim of the work reported in this thesis was to develop a scoring algorithm that converts ratings from a validated disease-specific quality of life questionnaire called the Utility-Based Questionnaire-Cancer (UBQ-C) into a utility index that is designed for evaluating clinical trials to inform clinical decisions about cancer treatments. The UBQ-C includes a scale for global health status (1 item); and subscales for physical function (3 items), social/usual activities (4 items), self-care (1 item), and distresses due to physical and psychological symptoms (21 items). Data from three studies was used. A valuation survey consisted of patients with advanced cancer (n=204) who completed the UBQ-C and assigned time-trade-off utilities about their own health state. Clinical trials were of chemotherapy for advanced (n=325) and early (n=126) breast cancer. A scoring algorithm was derived to convert the subscales into a subset index, and combine it with the global scale into an overall quality of life index, which was converted to a utility index with a power transformation. Optimal weights were assigned to the subscales that reflected their correlations with a global scale in each study. The derived utilities were validated by comparison with other patient characteristics. Each trial was evaluated in terms of differences in utility between treatment groups. In the valuation survey, the weights (range 0 to 1) for the subset index were: physical function 0.28, social/usual activities 0.06, self-care 0.01, and distresses 0.64. Weights for the overall quality of life index were health status 0.65 and subset index 0.35. The mean of the utility index scores was similar to the mean of the time trade-off utilities (0.92 vs. 0.91, p=0.6). The weights were adjusted in each clinical trial. The utility index was substantially correlated with other measures of quality of life, discriminated between breast cancer that was advanced rather than early (means 0.88 vs 0.94, p<0.0001), and was responsive to toxic effects of chemotherapy in early breast cancer (mean change 0.07, p<0.0001). There were trends to better mean scores on the utility index for patients allocated to standard-dose versus high-dose chemotherapy in the early cancer trial (p=0.1), and oral versus intravenous chemotherapy in the advanced cancer trial (p=0.2). In conclusion, data from a simple, self-rated, disease-specific questionnaire can be converted into a utility index based on cancer patients’ preferences. The index can be optimised in different clinical contexts to reflect the relative importance of different aspects of quality of life to the patients in a trial. The index can be used to generate utility scores and quality-adjusted life-years in clinical trials. It enables the evaluation of the net effect of treatments on health-related quality of life (accounting for trade-offs between disparate aspects); the evaluation of the net benefit of treatments (accounting for trade-offs between quality of life and survival); and an alternate perspective for comparing the incremental cost-effectiveness of treatments (accounting for trade-offs between net benefit and costs). The practical significance of this work is to facilitate the integration of data about health-related quality of life with traditional trial endpoints such as survival and tumour response. This will better inform clinical decision-making, and provide an alternate viewpoint for economic decision-making. Broadly, it will help patients, clinicians and health funders make better decisions about cancer treatments, by considering potential trade-offs between effects on survival and health-related quality of life.

Until recently, long-term effects of a critical illness (CI) have received little attention from intensive care staff, who have traditionally measured outcome from an intensive care unit (ICU) by morbidity and mortality. However, it is now acknowledged that CI is a continuum that begins before ICU and continues to impact on a patient�s quality of life after they have been discharged home. Measuring health related quality of life (HRQOL) is a complex matter due to its multifaceted, subjective and dynamic nature. There has been a lack of consensus in the literature regarding the most appropriate methodological approaches and measuring instruments to use. This disparity has impeded comparison between studies. The aim of this thesis was to review the literature between January 1998 and December 2003 that focused on HRQOL for patients after a CI to identify and summarise themes and key outcomes. There were two main areas of focus - the methods used to measure the effects of the CI, and evaluation of the patient outcomes. An electronic search for relevant articles was conducted using the common clinical research databases and key words such as health related quality of life, outcomes and critical illness. Reference lists from these articles and conference proceedings were reviewed to identify further studies. There were 74 primary papers identified that reflected a number of subcategories including general ICU, Acute Respiratory Distress Syndrome (ARDS), and elderly patients. There were four categories of instruments used in the literature including those that measured acuity of illness, physical functioning, psychological functioning and HRQOL. The majority of studies used more than one measuring instrument, most of which had been previously validated. Results from the studies were diverse, but it is apparent that physical and psychological recovery from a CI may be a slow and varied process. Most studies were observational; only one randomised control study examined the benefits of a physical exercise program for patients post-hospital discharge. In general, there was no evidence of how to translate the study findings into some form of structured program to assist the patient with any identified problems. To enhance continuum of care, integration of ICU, hospital and rehabilitation services could target identified physical and psychological problems to assist patient recovery. However, strong evidence on the benefits of initiatives such as inpatient follow-up, outpatient clinics and use of ICU diaries is yet to be demonstrated.

Doctor of Philosophy(PhD) / The aim of the work reported in this thesis was to develop a scoring algorithm that converts ratings from a validated disease-specific quality of life questionnaire called the Utility-Based Questionnaire-Cancer (UBQ-C) into a utility index that is designed for evaluating clinical trials to inform clinical decisions about cancer treatments. The UBQ-C includes a scale for global health status (1 item); and subscales for physical function (3 items), social/usual activities (4 items), self-care (1 item), and distresses due to physical and psychological symptoms (21 items). Data from three studies was used. A valuation survey consisted of patients with advanced cancer (n=204) who completed the UBQ-C and assigned time-trade-off utilities about their own health state. Clinical trials were of chemotherapy for advanced (n=325) and early (n=126) breast cancer. A scoring algorithm was derived to convert the subscales into a subset index, and combine it with the global scale into an overall quality of life index, which was converted to a utility index with a power transformation. Optimal weights were assigned to the subscales that reflected their correlations with a global scale in each study. The derived utilities were validated by comparison with other patient characteristics. Each trial was evaluated in terms of differences in utility between treatment groups. In the valuation survey, the weights (range 0 to 1) for the subset index were: physical function 0.28, social/usual activities 0.06, self-care 0.01, and distresses 0.64. Weights for the overall quality of life index were health status 0.65 and subset index 0.35. The mean of the utility index scores was similar to the mean of the time trade-off utilities (0.92 vs. 0.91, p=0.6). The weights were adjusted in each clinical trial. The utility index was substantially correlated with other measures of quality of life, discriminated between breast cancer that was advanced rather than early (means 0.88 vs 0.94, p<0.0001), and was responsive to toxic effects of chemotherapy in early breast cancer (mean change 0.07, p<0.0001). There were trends to better mean scores on the utility index for patients allocated to standard-dose versus high-dose chemotherapy in the early cancer trial (p=0.1), and oral versus intravenous chemotherapy in the advanced cancer trial (p=0.2). In conclusion, data from a simple, self-rated, disease-specific questionnaire can be converted into a utility index based on cancer patients’ preferences. The index can be optimised in different clinical contexts to reflect the relative importance of different aspects of quality of life to the patients in a trial. The index can be used to generate utility scores and quality-adjusted life-years in clinical trials. It enables the evaluation of the net effect of treatments on health-related quality of life (accounting for trade-offs between disparate aspects); the evaluation of the net benefit of treatments (accounting for trade-offs between quality of life and survival); and an alternate perspective for comparing the incremental cost-effectiveness of treatments (accounting for trade-offs between net benefit and costs). The practical significance of this work is to facilitate the integration of data about health-related quality of life with traditional trial endpoints such as survival and tumour response. This will better inform clinical decision-making, and provide an alternate viewpoint for economic decision-making. Broadly, it will help patients, clinicians and health funders make better decisions about cancer treatments, by considering potential trade-offs between effects on survival and health-related quality of life.

The overall aim of this thesis was to deepen knowledge of what it means to be a parent of an adult child who suffers from long-term mental illness. Data collection in studies I-III consisted of qualitative interviews with 26 parents. In study I, 16 mothers and, in study II, 10 fathers were interviewed about the way in which their everyday life was affected when an adult child suffers from long-term mental illness. Data were analysed using qualitative content analysis. In study III, the same 26 parents participated as in studies I-II. The aim of the study was to investigate parents’ conceptions of the mental health care. Data were analysed by means of the phenomenographic method. Study IV is based on questionnaires completed by 151 parents. The aim was to investigate mothers’ and fathers’ health related quality of life (HRQOL) focusing on self-rated symptoms of anxiety, depression and burden as well as their experiences of encounters with the mental health services. Data were analysed for the most part by means of non-parametric method. The mothers’ everyday life was characterized by constant preparedness to adapt their life situation to the needs of their child (I). The fathers’ inherent ongoing struggle to ensure the child’s well-being required both strength and courage. Fathers attempted to maintain a good balance in life; this balancing act depended on collaboration between those involved in the child’s life, the family, the healthcare services and other authorities (II). The parents described feeling excluded from professional care and questioned its quality and accessibility (III). Mothers’ self-rated HRQOL was lower and they were also affected by burden and mental ill health to a greater extent than the fathers (IV). The results highlight shortcomings in the interaction between parents and mental health professionals. This highlights the importance of interventions that support and strengthen cooperation between parents and mental health professionals in the care of children who suffer from mental illness.

Objetivos: a) Investigar os efeitos de um programa de reabilitação pulmonar (RP) sobre os sintomas, a qualidade de vida relacionada à saúde (QV) e a capacidade de exercício medida pelo teste de caminhada de seis minutos (TC6m) e pelo teste de esforço cardiopulmonar (TECP) e b) estudar a associação entre estes efeitos em pacientes com doença pulmonar obstrutiva crônica (DPOC). Pacientes e Métodos: Estudamos 28 pacientes com DPOC moderada a grave, estáveis (idade 63,9±6,8 anos; volume expiratório forçado no primeiro segundo (VEF1) 0,97±0,28L) antes e depois da RP. As alterações nos desfechos clínicos como o questionário Saint George (Saint George’s Respiratory Questionnaire, SGRQ), a dispneia, o desconforto de membros inferiores (escala de BORG) e a capacidade de exercício com a RP foram examinados. A associação entre as mudanças nos parâmetros fisiológicos do TC6m e do TECP e as demais variáveis foram investigadas. Resultados: Observamos uma melhora significativa em parâmetros fisiológicos após a RP. Houve aumento da distância caminhada no TC6m (366±104 vs 442±78 m, p<0,0001), do consumo de oxigênio (VO2) de pico no TECP (857± 366 vs 1001±360 ml/min, p=0,02) e da carga máxima de trabalho (51±27 vs 79±38 Watts, p<0,0001) com a RP. Também foi observada melhora do desconforto em membros inferiores, da dispneia no final do TC6m (4 – 1,5 Borg, p<0,001) e durante o TECP (5 – 4 Borg, p<0,001), do escore total (56±20 vs 45±18, p<0,001) e dos domínios do SGRQ após a RP. A melhora nos escores de QV com a RP esteve associada com a variação da intensidade da dispneia no exercício durante a caminhada (r=0,43, p=0,025) e não se associou com a variação na capacidade de exercício. Não houve relação entre o incremento da distância percorrida e o aumento do VO2 com a RP. Conclusões: Houve melhora de todos os desfechos estudados com a RP. Apenas a variação da dispneia durante o TC6m se relacionou com as mudança da QV após a reabilitação em pacientes com DPOC. Não houve relação entre a variação da distância caminhada e do VO2 com a RP. Estes resultados sugerem que o TC6m e o TECP podem ter funções complementares na avaliação dos efeitos da RP. / Aims: a) To investigate the effects of a pulmonary rehabilitation (PR) program on the symptoms, health related quality of life (HRQL) and exercise capacity as measured by a six-minute walk test (6MWT) and a cardiopulmonary exercise test (CPET) and b) to study the association between these effects in patients with chronic obstructive pulmonary disease (COPD). Patients and Methods: We studied 28 patients with stable moderate to severe COPD (mean age, 63.9±6.8 years; forced expiratory volume in the first second (FEV1; 0.97±0.28 L) before and after PR. The changes in HRQL (Saint George's Respiratory Questionnaire scores, SGRQ), dyspnea, lower limb discomfort (Borg scale) and exercise capacity induced by PR were examined. The association between changes in physiological parameters of 6MWT and CPET and the other variables was also investigated. Results: We found an improvement in physiological variables after PR. There was an increase in 6MWT distance (366±104 vs 442±78 m, p<0.0001), peak oxygen uptake (VO2) measured by CPET (857±366 vs 1001±360 ml/min, p=0.02) and maximal work load (51±27 vs 79±38 Watts, p<0.0001). Improvement in leg fatigue and dyspnea at the end of the 6MWT (4 vs 1.5, p<0.001) and CPET (5 vs 4, p<0.001), in SGRQ total score (56±20 vs 45±18, p<0.001) and domains were also observed after PR. The improvement in HRQL scores after PR was related to the variation in the intensity of dyspnea at the end of the 6MWT (r=0.43, p=0.025) and was not associated with changes in exercise capacity. There was no relationship between the increase in walked distance and in VO2 after PR. Conclusions: PR induced an improvement in all outcomes studied. Only the change in dyspnea at the end of the 6MWT was associated with the change in HRQL induced by PR in COPD patients. There was no relationship between walked distance and peak VO2 changes. The results suggest that 6MWT and CPET can have complementary functions in the evaluation of PR outcomes.

Poucos estudos têm avaliado a estrutura dimensional do Oral Health Impact Profile-14 (OHIP-14). Análise sobre a dimensionalidade e a adequação do OHIP-14 pode ajudar a melhorar a interpretação deste instrumento. Os objetivos desta tese foram avaliar a dimensionalidade e testar um modelo conceitual de qualidade de vida relacionada à saúde bucal utilizando a escala OHIP-14. A tese foi organizada em 3 manuscritos. O primeiro manuscrito "Comparison of two assessment instruments of the quality of life in older adults" teve como objetivo investigar se existe convergência entre as dimensões da versão abreviada do questionário da Organização Mundial da Saúde sobre Qualidade de vida (WHOQOL-Bref) e do questionário Perfil do Impacto de Saúde Bucal-14 (OHIP-14). Neste estudo, foram avaliados 872 idosos do sul do Brasil. As dimensões dos questionários WHOQOL-Bref e OHIP-14 foram correlacionas por afinidade. Todas as correlações analisadas apresentaram baixa magnitude. Apesar dos questionários WHOQOL-Bref and OHIP-14 apresentarem dimensões relacionadas, eles medem as relações físicas, sociais e psicológicas de maneira diferente. O segundo manuscrito "Oral Health Impact Profile-14: a Unidimensional Scale?" teve como objetivo investigar a estrutura dimensional do OHIP-14. As amostras foram provenientes de dois estudos realizados no Brasil, um no Rio de Janeiro (N=504) e o outro em Carlos Barbosa (N=872). Análises Fatoriais Confirmatória e Exploratória foram realizadas para identificar as dimensões do OHIP-14. As análises fatoriais confirmaram um fator para ambos os estudos. Nossos resultados sugerem que o OHIP-14 é uma escala unidimensional. O terceiro manuscrito "Testing the applicability of a conceptual model of oral health-related quality of life in community-dwelling older people" teve como objetivo testar o modelo conceitual de Wilson e Cleary em relação à qualidade de vida relacionada à saúde bucal. Uma amostra aleatória de 578 idosos do sul do Brasil foi avaliada.O modelo conceitual de Wilson e Cleary foi testado usando a modelagem de equações estruturais, incluindo: edentulismo, sintomas, estado funcional, percepção de saúde bucal, qualidade de vida relacionada à saúde bucal e variáveis sociodemográficas. No modelo final, o edentulismo foi correlacionado com a insatisfação da aparência dos dentes (r = -0,25). O pior estado funcional foi correlacionado com pior percepção de saúde bucal (r = 0,24). A idade teve um efeito direto no OHIP-14 (r = -0,15). Houve um efeito indireto do sexo no OHIP-14 através do estado funcional (r = 0,12).Os resultados apresentados mostram que, para idosos brasileiros, variáveis como sexo e idade desempenham um papel importante para o entendimento conceitual de qualidade de vida relacionada à saúde bucal. Nossos resultados sugerem que o OHIP-14 não avalia o impacto das condições bucais na qualidade de vida numa perspectiva multidimensional, mas em uma única dimensão. A presente tese demonstrou que há caminhos diretos e mediados entre as variáveis clínicas e não clínicas em relação à qualidade de vida relacionada à saúde bucal. / A few studies have evaluated the dimensional structure of Oral Health Impact Profile-14. Further analysis on the dimensionality and the adequacy of OHIP-14 can help improve the interpretation of this instrument. The objectives of this thesis were to assess the dimensionality and testing a conceptual model of oral health-related quality of life using the OHIP-14 scale. The thesis was organized in three manuscripts. The first manuscript "Comparison of two assessment instruments of the quality of life in older adults" aimed to investigate if there is convergent validity between the dimensions of World Health Organization Quality of Life Questionnaire-Brief Version (WHOQOL-Bref) and Oral Health Impact Profile-14 (OHIP-14) questionnaires. In this study, 872 elderly Southern-Brazilians were evaluated. The dimensions of WHOQOL-Bref and OHIP-14 questionnaires were correlated by affinity. All correlations analyzed had a low magnitude. Despite the fact that WHOQOL-Bref and OHIP-14 instruments have related dimensions, they measure physical, psychological and social relations differently. The second manuscript "Oral Health Impact Profile-14: a Unidimensional Scale?" aimed to investigate the dimensional structure of the OHIP-14. Subjects were from Rio de Janeiro (N=504) and Carlos Barbosa (N=872) Studies in Brazil. Exploratory and Confirmatory Factor Analysis were performed to identify the dimensions of OHIP-14. The factor analysis confirmed one factor in both studies. Our findings suggest that the OHIP-14 is a unidimensional scale. The third manuscript "Testing the applicability of a conceptual model of oral health-related quality of life in community-dwelling older people" aimed to test Wilson and Cleary's conceptual model in relation to oral health-related quality of life. A random sample of 578 elderly Southern-Brazilians was evaluated. Wilson and Cleary's conceptual model was tested using structural equations modeling including: edentulism, symptom status, functional health, oral health perceptions, oral health-related quality of life, and sociodemographic variables. In the final model, edentulism was negatively correlated to dissatisfaction of appearance of their dental prostheses (r= -0.25). The worse functional status was correlated with poor oral health perception (r= 0.24). Age had a direct effect on OHIP-14 (r= -0.15). There was an indirect effect of sex on OHIP-14 via functional status (r= 0.12). The results showed that for elderly Brazilians variables such as sex and age are important in the conceptual understanding of oral health-related quality of life. Our findings suggest that the OHIP-14 may not evaluate the oral impact on quality of life on a multidimensional perspective, but in a single dimension. The present thesis demonstrates that there are direct and mediated pathways between clinical and nonclinical variables in relation to oral health-related quality of life.

Fundamentação e Objetivo: A epilepsia é a doença neurológica mais comum em crianças. A avaliação da qualidade de vida destas crianças é importante para otimizar o tratamento delas. É importante para obter os pontos de vista das próprias crianças e seus pais. No entanto, existem poucos instrumentos que avaliem a qualidade de vida através da visão das crianças e dos seus pais. O objetivo deste estudo foi desenvolver e validar uma nova ferramenta para avaliação da qualidade de vida em crianças com epilepsia através de seus pais e dos pacientes. Material e Métodos: Baseada no trabalho anterior de Arunkumar e colaboradores, foi elaborada uma escala de múltipla escolha com 20 questões independentes para as crianças e seus pais: A Quality-of-Life in Pediatric Epilepsy Scale (QLPES). A análise fatorial com rotação VARIMAX foi usada para identificar possíveis áreas para as 20 questões propostas e alfa de Cronbach foi utilizado para testar a consistência das escalas. As respostas dadas pelos pacientes e seus pais ou cuidadores foram correlacionadas com frequência e gravidade das crises e com outras variáveis relacionadas com a epilepsia. Resultados: No total, 171 pacientes e seus pais participaram deste estudo. Setenta e quatro pacientes (43,3%) eram do sexo feminino, com médias de 13,3 (DP = 3,0) anos de idade e de 5,1 (DP = 3,1) anos de escolaridade. O alfa de Cronbach para cada domínio isolado sugerido pela analise fatorial foi abaixo de 0,7 para cada grupo. Entretanto, o alfa de Cronbach para todas as perguntas na escala dos pais foi de 0,83, e de 0,74 para as crianças. Para os pais ou cuidadores, as pontuações do QLPES foram menores para as mães/cuidadoras, para as crianças que usavam dois ou mais medicamentos antiepilépticos, para crianças com mais tempo de epilepsia, com maior duração de crises, ou aquelas com maior número de crises. Para as crianças, a pontuação QLPES foi menor para pacientes do sexo feminino, para as crianças que usavam dois ou mais medicamentos antiepilépticos, para aquelas com maior frequência de crises, e para crianças com EEG normal. Conclusão: A QLPES apresenta validade interna, consistência interna, confiabilidade teste-reteste e boa sensibilidade. A QLPES é um instrumento útil, preciso, rápido e fácil de usar, que reflete adequadamente a forma como a epilepsia afeta a qualidade de vida de crianças/adolescentes, assim como ele reflete como a epilepsia pediátrica afeta a qualidade de vida dos pacientes na perspectiva de seus pais ou cuidadores. / Background and Purpose: Epilepsy is the most common neurological condition in children. The evaluation of the quality of life of these children is important to optimize the treatment of them. It is important to obtain the views of the children themselves and of their parents. However, there are few scales assessing quality of life through both. The purpose of this study was to develop and validate a new parent- and patient- tool for evaluating health-related quality-of-life in pediatric epilepsy. Design and Methods: Based on previous work of Arunkumar and colleagues, we created a multiple choice scale with 20 independent questions for children and their parents. The Quality-of-Life in Pediatric Epilepsy Scale (QLPES). Factor analysis with VARIMAX rotation was used to identify possible areas for the 20 proposed questions, and Cronbach's alpha was used to test the scale’s consistency. The answers given by patients and their parents or caregivers were correlated with frequency and severity of the seizures and with other epilepsy-related variables. Results: A total of 171 patients and their parents participated in this study. Seventy four (43.3%) patients were female, with mean of 13.3 (SD=3.0) years of age and 5.1 (SD=3.1) years of schooling. The Cronbach's alpha of isolated domains suggested by the factor analysis were less than 0.7 for each group. However, alpha Cronbach for all the questions in the parents’ scale was 0.83 and 0.74 for children. For parents or caregivers, QLPES scores were lower for females responders, for children using two or more antiepileptic drugs, for children with longer time of epilepsy, longer seizure duration, or those with higher number of seizures. For children, QLPES scores were lower for female patients, for children using two or more antiepileptic drugs, for those with higher frequency of seizures, and for children with normal EEG. Conclusion: QLPES exhibits internal validity, internal consistency, test–retest reliability, and good sensitivity. QLPES is a useful, accurate, brief and easy to use instrument that adequately reflects the way epilepsy affects the quality of life of children/adolescents, as well as it reflects how pediatric epilepsy affects quality of life in the perspective of their parents or caregivers.

Objetivos: Avaliar o desempenho no teste de caminhada de seis minutos (TC6M) em pacientes adultos com bronquiectasias não fibrocísticas, estabelecendo associações entre TC6M e qualidade de vida relacionada à saúde (QVRS). Secundariamente, determinar relações entre TC6M, achados clínicos e função pulmonar a fim de identificar preditores de tolerância ao exercíco. Métodos: Estudo transversal envolvendo pacientes com bronquiectasias não fibrocística, idade ≥ 18 anos, com pelo menos um sintoma respiratório por 2 ou mais anos e volume expiratório forçado no primeiro segundo (VEF1) ≤ 70% do previsto. Realizou-se avaliação clínica, função pulmonar, TC6M e QVRS pelo questionário Short-Form 36. Resultados: Foram incluídos 70 pacientes (48 mulheres; idade média 54,5±17,7 anos; VEF1 médio 44,9±14,5%). Desempenho alterado no TC6M foi observado em 23 pacientes (Grupo 1) e desempenho normal em 47 pacientes (Grupo 2). Em comparação aos pacientes do Grupo 2, os pacientes do Grupo 1 apresentaram menor idade (p<0,001), menor idade de diagnóstico das bronquiectasias (p=0,006), menor proporção de ex fumantes (p=0,048), menor índice de massa corporal (IMC) (p=0,003), pior VEF1 % previsto (p=0,041) e pior pressão expiratória máxima % previsto (p=0,021). Não houve diferença significante entre grupos nos escores de QVRS (p>0,05). No modelo de regressão logística, idade menor (p=0,002) e IMC menor (p=0,034) se associaram significantemente com desempenho precário no TC6M. Conclusão: Elevada proporção de pacientes com bronquiectasias não fibrocísticas apresenta desempenho precário no TC6M. O desempenho ao exercício não se relacionou com a QVRS. Idade e IMC se associaram com performance ao exercício. / Objective: To determine the performance in 6-minute walk test (6MWT) in adult patients with non-cystic fibrosis bronchiectasis, establishing the relationship between 6-MWT and health-related quality of life (HRQL). Secondarily, to determine the relationship between 6MWT, clinical findings and lung function in order to identify predictors for exercise tolerance. Methods: Cross-sectional study involving patients with non-cystic fibrosis bronchiectasis aged ≥ 18 years, with at least one respiratory symptom for 2 years or more, and with predicted forced expiratory volume in first second (FEV1) ≤ 70%. Patients were submitted to clinical evaluation, pulmonary function tests, 6MWT and HRQL using the Short-Form 36 Questionnaire. Results: Seventy patients were included (48 females; mean age, 54.5±17.7 years; mean FEV1, 44.9 ±14.5%). We observed poor performance in 6MWT in 23 patients (Group 1) and normal performance in 47 patients (Group 2). In comparison with Group 2 patients, Group 1 patients presented lower age (p<0.001), lower age at diagnosis of bronchiectasis (p=0.006), lower proportion of ex-smokers (p=0.048), lower body mass index (BMI) (p=0.003), worse FEV1 % predicted (p=0.041), and worse maximum expiratory pressure % predicted (p=0.021). There was no significant difference between groups on scores for HRQL (p>0.05). In a logistic regression model, lower age (p=0.002) and lower BMI (p=0.034) were significantly associated with poor performance in 6MWT. Conclusion: There is a high rate of poor performance in 6MWT in patients with non-cystic fibrosis bronchiectasis. The exercise performance was not related to HRQL. Age and BMI were associated with the exercise performance.